What is a Laparoscopy and how is the recovery?

Last Wednesday I went in to have an Laparoscopy completed to do an exploration for endometriosis or other problems causing my symptoms. Endometriosis was confirmed after an hour long surgery.

What is a Laparaoscopy? It is a surgery done by small incisions in the abdomen and/or pelvic region with a camera. It can confirm diagnosis of things like fibroids, endometriosis, ovarian cysts and tumors or can be done for surgical procedures like partial hysterectomies, lump removal and endometriosis tissue removal.

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I was brought into an outpatient surgery center where they prepped me about 90 minutes before my procedure. They do a pregnancy test, hemoglobin test and start an iv with antibiotics. The doctor and anesthesiologist came back and talked to me before the procedure. My husband was able to come back and wait with me until they took me back into the surgery room.

The path to the room was very cold. The room appeared sterile and bright lights were everywhere. All the nurses introduced themselves to me and made me feel very comfortable. The last time I had a procedure done for my D&C I was asleep prior to entering the operating room so it was weird to be awake while they prepped me.

I came out of my surgery in the recover room with a very sore belly. The nurse kept giving me pain medication until the pain was a 3 out of 10. My stomach looked like I swallowed a basketball. My husband spoke with the doctor after my procedure which confirmed I had endometriosis and an inflamed bladder.

At home I was all set up on the couch. It was advised not to go up or down stairs and stay close to a restroom. I fell right asleep and my husband went to pick up the pain medication and nausea pills. I will tell you that every time I have surgery, I become extremely nauseous. I asked this time for the doctor to prescribe some Phenergen which will not only help you sleep but eliminate the stomach problems. I was given Tylenol 3′s which lasted through the weekend. After that I moved on to Aleve.

I really didn’t notice any pain in my shoulders and back like many people said I would and I think partially it’s because of the pain medication and staying laying for most of the time.

Here are some pictures!

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Now here are my tips for recovery –

1. Make sure you have someone the first couple of days to help pull you up off the couch or the bed. Your abs will be incredibly sore. I often found myself sliding off the side of the couch just to get up.

2. Go to the restroom – it’s going to burn but it helps alleviate some pain and fullness in your belly.

3. Drink lots of non-carbonated liquids.

4. Have food and snacks at home to help you. I basically lived off of Annie’s gluten free mac & cheese, jello and gluten free crackers.

5. You will likely be constipated. I resorted to yogurt even though I have lactose problems just to get my bowels moving. I ate 3 containers of yogurt and never had a loose stool or stomach ache.

6. If you just have the scope done with nothing removed and 1 entry point, I would say 3-4 days is a good time to recover. If you end up having things removed, plan on being out for at least a week.

7. Rest! Don’t try to do anything, even though it’s incredibly boring! I really believe I’m healing faster because I’ve stayed on the couch and forced my body to rest instead of jumping back into things too quickly.

8. Get up and move every few hours just to prevent stiffness.

9. Make sure you have baggy pants because anything tight around your waist will be very uncomfortable. Not to mention I gained 10 pounds right after the surgery and none of my normal pants fit me. So I’m glad I had some baggy pants laying around I could wear.

10. Dont stress. While it’s overwhelming to think about what  is going on, it’s important to remain stress free!

So, today is my last day on the couch and I couldn’t be more excited about it. I’m ready to get back into my gym and back to work. I finally can sit up for a little bit at a time and write this post. That’s been a huge struggle for me just to sit up right.

Many of you sent comments, messages and love to me while I was down and I appreciate it so much.

Thank you!

 

 

 

Living and Coping with Chronic Illness: Staying Positive is Key!

Today is day 3 of recovery from my laparascopy procedure. I’m still in quite a bit of pain, nauseous if I get up to move around  and have a huge swollen belly. My body hasn’t stopped itching since I had the procedure despite taking a shower and rinsing all the antibiotic gel stuff off. But overall, I think I’m healing more and more each day. I feel much more aware today despite being very sore still.

The laparascopy confirmed an endometriosis diagnosis and I also have an inflamed bladder, whcih I will need to go to a urologist specialist to have it cheked out. I will go back to the doctor  in a couple of weeks to follow up and see where we go from here.

I wanted to write this post after a negative comment I read on a forum while researching chronic disease. It was a comment about a certain chronic disease being “fake” just to collect disability money and live off the system, which I found highly offensive. I never personally had someone say this to me (partially because I would chew them out) but I know other friends have heard similar things. I have however heard the following on numerous occasions:

Yes, I know there is “something wrong with me.”

Yes, I know that this “isn’t normal.”

Yes, I am “sick of being sick.”

N0, I am “not pregnant.”

No, I am “not falling apart.”

I do not need a constant reminder from people about what I am going through. You want to know what I need? More of the supporting, loving and encouraging people in my life that have been there through it all, never question my illness or treatment and make me feel sane during a very emotionally charged time. If you are not one of these people, please don’t expect to hear from me that much.

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Sometimes I think I need another business card for my issues or a line on my resume for my special needs.  It’s very hard for some people to imagine that this could happen to someone all at once or that the treatment is difficult and slow. It’s even more difficult for people to believe it happens to young people like me who are in their early 30′s. That usually takes the direction into a conversation of how much worse it’s going to be when I get “older.”

Living with a chronic illness is difficult enough, we don’t need people in our lives challenging how we feel, minimizing our pain and treating us differently for suffering. I never thought in a million years I would spend an entire year trying to find answers. I didn’t expect to spend a whole year dramatically changing my entire lifestyle.

A chronic disease is something that lasts longer than 3 months and affects numerous parts of your life. Right now I’m living with celiac disease, endometriosis, arthritis, latex sensitivity and hypothyroidism. My body is completely out of whack. This is challenging enough as it is, I don’t need inconsiderate jerks to remind me.

Alright, we know this is an issue and if you are reading my blog, I know you totally understand where I’m coming from with this point. So, how can we help ourselves through this?

1. Slowly back away from people in your life that aren’t supportive. The negativity is draining you emotionally and is impeding your recovery from illness. In order to get through it all, you have to be mentally and physically tough. It will be hard to say good bye at first but I can promise it will be worth it in the long run. Replace those negative nelly’s with people who genuinely care, love and support you unconditionally. This includes a clean sweep on social media sites like Facebook, Twitter etc.

2. Don’t debate people over the issue. There is no point. If they don’t or can’t understand what you are going through, they aren’t going to change their mind after you “educate” them on the disease. It isn’t worth your time or energy.

3. Focus on yourself for a while. It’s ok to miss the parties, happy hour’s and other social events. They will be much more fun once you can get out there healthy and enjoy the time with friends.

4. Follow doctors orders. I struggle with this. I want to be superwoman and heal quick to keep moving at a fast pace. I actually thought I would be able to drive to Pittsburgh to speak today at the Celiac Awareness Tour 3 days after my surgery. Primarily it’s because I am nuts. Sitting in a car for 3.5 hours there and back would have been torture for me. But I thought I would be fine after 1-2 days post operation. Lesson learned on this one!

5. Some of you might get mad at me for saying this but don’t use your illness as an excuse to get out of things all the time. That’s when people get mad at you and when they start thinking your condition isn’t “real” or whatever else they think. Just be honest and truthful with people and they will be much more accepting of your empty seat at the dinner table.

Do you suffer from this? 

How do you stay strong in the presence of non-believers?

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Natural Remedies: Acupuncture and/or Acupressure for Endometriosis

Yesterday, I completely forgot to write a post about a recent experience with massage. I really love a great massage, especially if the masseuse has great, strong hands. Deep tissue massages are a great way to help your muscles!

While I attended the Earth Fare Columbus health fare last weekend, I met  Kathy Petty. She was doing chair massages and won me over in less than 5 minutes. She made me a believer and my body melted in her hands.

Tuesday (the day before my laparascopy), I went to get a massage with Kathy at her location on Cleveland Ave (just a little south of 270). Kathy is trained in acupressure and told me she enjoys incorporating some of those pressure points into massages. The massage was fantastic however something interesting happened when I was on the table.

Kathy began massaging my feet which always feels amazing. I would pay for someone to just dig into my hands and feet. Well, a little ways into the massage on my feet, I felt an incredible pain near my ankle and almost flew off the massage table. I asked her what that point was that she just applied pressure to because it was painful and her reply, “uterus.” I couldn’t believe what she just said. My other sore point on my feet was for my ovaries! Incredible to me.

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Kathy didn’t know anything about my history with cramping nor did she know I was going to have a laparascopy the following day to check my lady parts!

Acupressure is just one of a number of Asian bodywork therapies (ABT) with roots in traditional Chinese medicine (TCM).

Traditional Chinese medical theory describes special acupoints, or acupressure points, that lie along meridians, or channels, in your body. These are the same energy meridians and acupoints as those targeted with acupuncture. Through these invisible channels flows vital energy or a life force called qi (ch’i). It is also believed that these 12 major meridians connect specific organs or networks of organs, organizing a system of communication throughout your body. The meridians begin at your fingertips, connect to your brain, and then connect to an organ associated with a certain meridian.

According to theory, when one of these meridians is blocked or out of balance, illness can occur. Acupressure and acupuncture are among the types of TCM that are used to help restore balance. Herbal and nutritional therapy, meditation, and therapeutic massage may also help. – Source WebMD

I’ve also done acupuncture in the past with Dr. Shauna Hindman of Polaris Wellness Acupuncture and Chiropractic Center to help me with my sleeping. I will be the first to admit I was skeptical about the entire process. But when I started becoming more calm and sleeping better, I became a believer. Another issue for me is the needles. I know many of you are like me and think the needles will be painful, but in actuality the are not!

I’m thinking based on how my recovery is going right now, next week I should be able to get with Dr. Shauna and start my acupuncture again. She sent me this amazing article on how acupuncture can help endometriosis.  I’m trying to take it easy, rest and sleep a lot to help my body recover from the trauma of  surgery.

Over the last few years, I’ve become much more aware of my body  and what I’m putting into it with food and medications. I do believe that there is something to acupressure and acupuncture. As I continue through this journey, I will keep everyone updated on how my treatment process is going.

I’m struggling today with a very bad sore throat and am in a decent amount of pain if I try to move around too much. I haven’t experienced the C02 yet but I’m waiting for it. I am happy I actually have some answers but now it is just another ailment to add to the rest of them. Should I update my resume for under the skills section to say: Celiac disease, Hashimoto’s Hypothyroidism, Latex Sensitivity, Rheumatoid Arthritis, Endometriosis and poor vision. (just kidding of course)

Which leads me to the question:

How many of you are handling or treating your endometriosis naturally? 

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Endometriosis Diagnosis – Now what?

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If you’ve been reading along with my last few posts, you know that I’ve been worried something else is happening in my body other than celiac disease. Well, I finally have some answers.

Yesterday I had a laparascopy procedure done to explore some problems I’ve been having with cramping all the time. I am always terrified to get put to sleep for general anesthesia because there is a battle in my head about not waking up.

“Laparoscopy is a surgery that uses a thin, lighted tube put through a cut (incision) in the belly to look at the abdominal organsor the female pelvic organsLaparoscopy is used to find problems such as cystsadhesionsfibroids, and infection. Tissue samples can be taken for biopsy through the tube (laparoscope).” – Source WebMD

Before I went back in to the test, my doctor came in to talk with me and explain further about the procedure. 30 minutes if there is nothing to find and more like an hour if they have to remove tissue from endometriosis.

My doctor was primarily looking for endometriosis. When I woke up after the exam, I learned it took almost an hour confirming the doctor’s suspicion that I have endometriosis.

So, what is Endometriosis?

“Endometriosis is the growth of endometrial tissue-which normally lines the uterus-in other parts of the body. Endometriosis typically grows in the abdominal cavity and most often attaches to the ovaries, fallopian tubes, outer surface of the uterus, bowels, or other abdominal organs.

Endometriosis growths, called implants or lesions, often bleed during menstruation, causing pain. They may also develop scar tissue (adhesions) that can interfere with an organ’s normal function. Scar tissue can also cause pain and trouble becoming pregnant (infertility).

Endometriosis can be treated with medicines or with surgery to remove implants and scar tissue.”Source WebMD

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My doctor removed tissue found on several different organs so I came out with 4 holes all over my stomach and pubic area from where he entered to scrape the tissue cells. The procedure was pretty easy and after getting home I slept pretty much the rest of the day and night.

Today is day 2 of recovery, and I’m hurting pretty bad. It’s nearly impossible for me to sit up without incredible pain. If I just lay with my body elevated a little, it doesn’t hurt much. Moving seems to be the biggest hurdle right now. Instead of stitches, the openings were glued together. And, I heard from everyone I would have pain in my shoulders from the CO2 but I don’t have that pain at all, so that’s one less thing to be concerned about!

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I want to thank you all for being so incredibly supportive and sending all your love, thoughts and prayers for me during this time. Knowing there are so many people that care and are offering help warms my heart.

I don’t meet up with the doctor again for the next few weeks. No lifting 10 pounds or more for 3-4 weeks. No working out for a minimum of 2-3 weeks and resting for a few days to regain my strength.

After I see the doctor again, I will talk to him about what I am going to do for treatment options. Endometriosis does not have a cure and from what I’m reading can be challenging to treat. I am relieved that it isn’t much more serious like ovarian cancer or other serious reproductive cancers. The doctor also found my bladder to be inflamed and will refer me to a urologist to check to see what’s going on there.

If this is the last piece of the puzzle, I will be elated! I can’t emphasize this enough – LISTEN to your BODY!! If you feel that something is wrong, don’t wait unit its too late. Get help and get treatment. Don’t take no for an answer if your instincts are telling you otherwise.

Had I not switched doctors because I was unhappy with the last one, I probably wouldn’t have found out about the endometriosis this soon and it may have progressed into something much worse.

While I was doing my research, I came upon a study which found a connection between celiac disease and endometriosis. Doesn’t it seem like everything can be linked to celiac disease?

Check out this study:

PURPOSE OF INVESTIGATION:

Celiac disease (CD) involves immunologically mediated intestinal damage with consequent micronutrient malabsorption and varied clinical manifestations, and there is a controversial association with infertility. The objective of the present study was to determine the presence of CD in a population of infertile women with endometriosis.

METHODS:

A total of 120 women with a diagnosis of endometriosis confirmed by laparoscopy (study group) and 1,500 healthy female donors aged 18 to 45 years were tested for CD by the determination of IgA-transglutaminase antibody against human tissue transglutaminase (t-TGA) and anti-endomysium (anti-EMA) antibodies.

RESULTS:

Nine of the 120 women in the study group were anti-tTGA positive and five of them were also anti-EMA positive. Four of these five patients were submitted to intestinal biopsy which revealed CD in three cases (2.5% prevalence). The overall CD prevalence among the population control group was 1:136 women (0.66%).

CONCLUSION:

This is the first study reporting the prevalence of CD among women with endometriosis, showing that CD is common in this population group (2.5%) and may be clinically relevant.

F.M. Aguiar et al. Serological testing for celiac disease in women with endometriosis. A pilot study. Clinical and Experimental Obstetrics & Gynecology. 2009;36(1):23-5.

I want to make sure those of you who may struggle with cramping throughout the month, severe periods and break through bleeding to get checked asap. There are serious ailments that can be caused by those symptoms. Get it checked before it checks you into something worse. If you have celiac disease, I think it’s fair to say we need to be extra diligent with our heath.

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This celiac mask is really getting on my nerves.

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Disclaimer: Men this post is for the ladies :)

Celiac disease is quite the emotional roller coaster. Whenever it seems as though you’ve got it figured out, something new creeps in just to keep you on your toes. Hence the title of this post about celiac being a “mask.”

Wednesday I’m having a laparoscopic procedure done to check for anything going on in my reproductive organs like endometriosis. I keep having these stabbing like cramping pains throughout the month and my ovulation time is excruciating. And even after cutting gluten, latex fruits/veggies, lactose, corn and poultry – I continue to gain weight right in my belly region. No, I am not pregnant.  

I’ve gained 10 pounds since Christmas and almost 20 since last summer. Today I woke up and weighed 5 pounds more than I did yesterday along with feeling a tightness and fullness in my stomach that I never usually have. Something is going on. I feel completely uncomfortable and out of control. I don’t eat gluten-free processed junk foods so I know that isn’t the case and even if I did do that, the weight doesn’t come on that quickly from over eating.

It really is true that once you resolve the main problem, you start finding things that were masked by the undiagnosed issue. Once you cut one thing, another comes along making you wonder if you are ever going to be able to eat anything ever again.

For me – I was diagnosed with celiac disease, Hashimoto’s hypothyroidism and arthritis last January. At that time, I cut gluten, poultry and latex laden fruits/vegetables. Then in the spring I cut lactose too as Greek yogurt continued to irritate my stomach. Finally in December, I cut corn. I’m not sure there is anything else to cut.

I’ve been able to manage the Hashimoto’s strictly with food. My thyroid levels are perfect with no extra medication. It took a full year to get there but I’m happy I chose not to take medicine.

Then I started feeling sick again last fall, which didn’t make sense because I’ve been very diligent about gluten removal only to find out that I should have cut corn too. The over compensation of corn products sent my body into overdrive again.

As a fluke, my old obgyn didn’t fill my Nuva Ring prescription and I have been off that for almost 2 months now. It’s amazing that my migraine headaches went away during my last 2 periods and I’m sleeping perfectly. Could it be that was causing all my sleep problems for the last 10 years?

Bottom line: I feel amazing. My head is clear. I’m productive again. I feel like I’m on top of my game. I’m not having any stomach pains (the old kind) and all of my blood work levels are perfect. So why am I having these other issues?? It is so cruel to think that I’ve done everything I’m supposed to do and there continues to be one missing link each time I think things are great.

Hopefully, Wednesday is the last missing link and I can get that all figured out. I will post again at the end of this week and let you know how it goes. I get really nervous about these types of procedures simply because I don’t have them often and I am terrified of anesthesia.

What other things did you find out you had along with celiac disease? 

 

Do I have celiac diease? Preparation and questions for your first doctor’s appointment.

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So, you’ve read my post about finding a doctor and now you are ready to make your first appointment! Congrats, that is the first step in getting answers for whatever has been plaguing you for years. I am not a medical doctor and do not understand the complexities of testing and diagnosis for celiac disease on the back end, so I am not going to post what type of medical tests you should ask for or have done. I will post links at the bottom of the post from other credible websites for you to review.

Here are my suggestions and tips for getting the most out of your initial doctor’s appointment for gluten intolerance and/or celiac disease.

Before making an appointment:

1. Find out if your doctor actually has experience treating and diagnosing celiac disease or other gluten related problems. There is no point in going to see a doctor who doesn’t specialize or isn’t familiar with these issues. You are just wasting time on getting answers.

2. Ask how long you will have for your first appointment. My doctor allows 30 minutes for a first appointment and 15 for follow ups. Don’t waste your time with the doctor chit chatting!

3. Prior to your appointment, write down all of your symptoms and chronicle your medical history. This will be much easier to show your doctor and review than sitting there trying to think of them all and realizing you didn’t bring up important ones after you already left.

4. Get your medical records from your other doctors sent over to the new one. You will need to sign a medical release of information and might have to pay a fee but it will be worth it for the new doctor to have all your information in one spot.

5. Know and chart your family medical history. Again much easier than trying to remember it all in a 30 minute appointment.

6. Write down every single prescription medication, over the counter medication, supplement and vitamin that you take. Include all the doses and schedule for each of them. Even ones you might be embarrassed you take like an over the counter weight loss pill.

7. Write down why you think you have celiac disease or problems with gluten.

8. DO NOT change anything about your diet or lifestyle prior to going to the doctor and having tests done. This is essential for finding out what is really going on. You have to get an accurate picture of your body condition in order to diagnose.

9. Understand there is no pill or medication for celiac disease if you do in fact have the autoimmune disease. The only way to manage it is with a gluten free diet.

10. Don’t panic or come to your own conclusions prior to going to your appointment. Be educated on your history, your body and yourself to provide the doctor with the exact picture of what is going on. This is the BEST way to get an accurate diagnosis of whatever is upsetting your body.

Questions for your doctor at your first appointment:

1. How do you diagnose celiac disease? What blood tests do you run? Do you test for the celiac genes? Will you want me to get a bowel biopsy? This past year I’ve realized doctors have so many different ideas of diagnosis. I’ve heard one speak about biopies being the only way to tell and others say genetic presence with condition improvement upon removing gluten are just as acceptable. It’s important to understand your doctor’s beliefs and thinking on the diagnosis component.

2. How quickly does you lab turn around results and when can you make your next appointment.

3. Do you provide aftercare, follow up blood tests, recommendations for support groups in the area and additional help?

4. If I don’t have celiac disease, what other conditions could I have with the symptoms I’m experiencing?

5. Can you refer me to a registered dietician specializing in celiac disease?

6. How often will I follow up with you after my original test results?

7. If I have nutrient deficiencies, what is you protocol for treatment?

8. What other tests should be run along with the celiac disease testing?

You know I love your feedback – Post below for others to see if you thought of things I missed!!

Websites for celiac medical tests:

 

http://www.csaceliacs.info/diagnosis_of_celiac_disease.jsp

http://www.cureceliacdisease.org/living-with-celiac/guide/diagnosis

http://digestive.niddk.nih.gov/ddiseases/pubs/celiac/

 

The Celiac and Corn Connection: Should you eliminate corn from your diet?

If you’ve been following my blog, you know that despite eating gluten free for over a year now, I continued to struggle last fall with some symptoms. Despite my bowel problems significantly improving (if not disappearing) I continued to suffer from excessive sleep, exhaustion, brain fog, moodiness, unexplained weight gain, severe joint/muscle soreness after exercising and an overall feeling of something not being right.

Finally in December I went and had my blood drawn again only to find that my gliadin levels actually have worsened over the last year. They should have significantly improved after strictly eliminating gluten from my diet and beauty products. Obviously I was concerned about this.

My doctor emailed me and said that recent studies have shown that corn and oats (even gluten free oats) are problematic for those of us with diagnosed celiac disease. The research was not done on people with gluten insensitivity or intolerance but very specifically for people who have been proven to have HLA-DQ2 and HLA-DQ8. I have both of these genes. You can read more about this study in the Plant Foods for Human Nutrition Journal.

Please do not take this the wrong way as I am not advocating for everyone who is gluten free to eliminate corn. For some people it is completely fine, but for those of us who actually cut gluten from their diet and continue to have ailments, this is something to research and consider.

Like many of you that are cutting gluten, you find yourself thrown into a world of corn. It seems that corn is even more difficult to eliminate than gluten. Corn is in EVERYTHING. I mean EVERYTHING.

I bought a bag of Lays Kettle chips – wrong – actually they are cooked in corn oil. You have to purchase the Kettle brand kettle chips for them to actually be safe for our consumption. Lesson learned.

It’s been exactly 2 weeks since I eliminated corn from my diet and I feel amazing. I am sleeping like a rock for 8 hours or so, I feel my head has cleared and I can actually be productive, I’ve done a couple of challenging workouts without any severe joint pain and muscle sorriness. I’d say overall this is a game changer for me. I am amazed that just after a couple of weeks, I feel this much better.

I see my doctor tomorrow and will update everyone with his comments!

Just something to think about when finding out you actually have the celiac genes and are still not getting well even after months of living gluten free. The things we find out day after day with this darn disease.

Comments

  1.  sarahporto says:

    Best wishes on figuring this out! Glad to hear you’re already feeling better. your quote “the things we find out day after day with this darn disease” resonates with me. Sometimes it feels like a never ending battle.But stay strong–as you already are–and you will get this figured out!

     

  2.  petitepea says:

    I found this article very interesting. I have had severe corn allergies (asthma, gastric upset, mood swings) and tested not only allergic to corn but the 90 some smuts(molds) that grow on corn. This fall i suddenly had all the joints in my body swell and become painful. My doctors wanted to do nothing until had this pain and swelling for at least 3-4 months but did get one to order ANA and RA factor blood tests which came back normal which means i likely do not have an auto immune disease or rheumatoid arthritis. So i began researching joint pain and swelling online and foods associated with it and it all came back to glutens. i went gluten free and within a few days saw improvement and after 3 weeks no more joint pain of swelling. Christmas came and i made the traditional pecan sticky buns and cheated by having some on Christmas Eve and Christmas Day. by the night of Christmas Day I was miserable as all my joints were once again swollen and in pain. Returned to gluten free and after a few days subsided again.

    Due to a chronic leukemia I was diagnosed with a couple years ago, my body has increased histamines so things I was never notably allergic to before in the last 3 years I have developed numerous severe even anaphylatic allergic reactions. I had an anaphylatic reaction to sulfa antibiotics which has lead to severe reactions to sulfates which means i have to eat organic anything that grows in the ground (fruits, vegetables, nuts, legumes, grains etc) because non-organic farming methods use ammonia sulfate as a fertilizer and that is enough to cause my lips and throat to swell.

    My quandary is finding the combo of gluten-free, corn-free and organic – very challenging to find all three. i have yet to find organic almond flour. Anybody have any ideas?

    Deb

     

    •  jacquiglutenfree says:

      I grind my almonds in the food processor to make flour. It is not as fine as some, but still works well for me. Have used it in breads.

       

      •  petitepea says:

        I was told that its hard to grind almonds without having them turn into nut butter which is why haven’t tried that. how long do you process them?

         

  3.  Sarah says:

    I have given up Gluten, Dairy and corn and it is life changing! Corn is not a good thing for me ether and I really think its worse for me the gluten…but I still need to stay away from all of the above. Headaches are gone, losing weight, less sleepy and things are moving along so much better!!

Body Image, Disordered Eating, Depression and Celiac in Women

Penn State University recently published a study finding that women with celiac disease often suffer from depression, stress, body image issues and weight regardless of compliance with the gluten free diet. It also showed a higher tendency for disordered eating which is something I’ve written about in the past. That post had the highest hits of all time on my blog, showing it is a concern for many women.

I think it is important to discuss why we feel this way and how we can improve our overall well-being with this lifelong disease.

For me, this hits me especially hard because I am in the fitness industry. As a fitness model, there is a certain expectation for appearance, body tone and overall physical fitness. This past year, I’ve spent all my time healing my body after diagnosis and making sure I’m healthy. Unfortunately, this impacts my ability to stay athletic and especially look athletic. I’ve taken a huge hit with this disease by gaining 20 pounds and struggling to complete a workout that 2 years ago would have been a breeze. People can say “oh you look great” or “I would love to look like you.” But, in this pretty little brain of mine, I have a completely different perception of how I want/should look. This completely ties into the body image issues discussed in the Penn study.

Now, granted my situation is different because I know all of you aren’t in the fitness and modeling world and aren’t interested in the perfect body, but we all have a vision of how we see ourselves and when we cant’ achieve that for whatever reason, it takes a mental toll on us. Women have the innate ability to beat themselves up over their own thoughts, even more than the comments of others.

After continuing to not feel well towards the end of last year, I ended up getting all my blood work tested again in December only to find my Gliadin IGG and IGA antibodies increased, instead of decreasing which is likely why I’ve been so incredibly sore after all my workouts. My body is still fighting something and inflaming my joints to the point that I don’t want to workout at all. I’m talking one little workout will make me sore for 7-10 days. That is unheard of for me.

Then I come to find out from my doctor that corn elicits the same autoimmune response for people carrying the celiac genes (I have both of them). I’m to cut corn for the next 90 days and then have my blood drawn again to see if my levels improve. I can tell you that just one week of being corn free and I feel so much better. My body seems to have deflated and I’m not AS sore after my workouts. Incredible.

But through all of this, I feel mentally and emotionally though I’m stronger than ever. Let me tell you how I did it….

First, I’ve never been one to keep my mouth shut and it’s gotten me in trouble a few times! But, I can tell you that I will never be afraid to speak up about celiac disease, gluten or anything related to it. You just make one snide comment to me and I will educate you beyond belief about my body, this disease making you fully understand what I’m going through. Or, I will just talk until that person will realize they won’t make the mistake again of saying something about celiac or gluten. You need to be able to stand up for yourself in these situations and not let others put you down or make you feel bad about our lifestyle. It is a lifestyle, it is not a diet.

Second, find a way to grieve the loss of gluten in your life. For me, I also had to grieve lactose which included my favorite food Greek yogurt and now corn. And, I love me some mexican food filled with corn so that was another problem. You feel like your life has come to and end and is ruined because you can’t eat these things, when in reality your life is just starting. Say goodbye to those foods. It took me 6 months at least to figure this out. I would see something and think “well, maybe I could just have a bite.” I never did it but I sure thought about it. The time has passed and I’m over that now. I understand those things are not food for me, they are poison. There is nothing I would love more than to have food from a food truck here in Philly, I’m looking at one right now as I write this post but it doesn’t break my heart that I can’t have them. For me, it was saying goodbye and making substitutions in my life.

Lastly, surround yourself with people who understand. I can’t emphasize this enough. Just starting this blog and finding thousands of you with the same problems creates a sense of security for me. A sense of unity about this disease. The isolation isn’t there anymore because I feel I have so many people to help me if I need it. The virtual world allows us to have more connections than we could ever imagine.

Without going through these three steps, you will continue to struggle with the challenging and emotional side effects of this disease. There won’t ever be peace of mind for you and it will constantly be a struggle. It isn’t going to be an over night change but going through the process over and over again will create a habit and retrain your thoughts and feelings about the disease.

The study results appear online and in an upcoming issue of Chronic Illness.

Gluten Free Philly Review: Giorgio’s on Pine

After using the Yelp app to search for gluten free places to eat in Philadelphia, we came across Giorgio’s that just happened to be near where we were walking. It’s on Pine street near the theater district, a little bit off the beaten path it seemed.

We got there about 7pm on a Tuesday night. We didn’t have to wait at all and they weren’t busy until later around 8pm. The hostess promptly seated us and brought over the menu. Pretty much anything on the menu could be made gluten free. They use Schar’s pasta but also have a brown rice pasta and gluten free pizzas. Our server was attentive and knowledgeable about gluten free. It seemed as though they were known in that area for gluten free foods.

I didn’t know we had to bring our own beer/wine or else I would have grabbed some on our way in. Lesson learned.

They brought out regular bread and garlic/oil for my husband and a separate gluten free bread tray for mine with my own oil to prevent cross contamination.

I started with the soup, a potato soup with mozzarella and bacon. It was really good but lacking the potato pieces in the soup I hoped for.

I chose the brown rice pasta with the beef goulash. It was very good. The pasta was cooked perfectly, just enough sauce and the beef was tender and juicy. Extra parmesan cheese on top and I was a happy camper. I only could finish about half of it so we boxed it up and took it back to the hotel.

My husband had the special with spicy sausage pasta with a light white wine sauce. He said it was amazing.

Dinner for less than $50 was a pleasant surprise!

I often struggle with finding places that have not only a gluten free menu but an understanding of cross contamination and safety concerns. Even if the food was horrible, they would get a great review for having such a wonderful experience for me.

I highly recommend this place for those of us looking for gluten free options!!

14 Delicious Gluten-Free Snack Options for Traveling

Next week will be 1 year that I started this celiac journey and it took about 8 months for me to really start figuring things out! I’ve been on several trips since then and realized many people aren’t sure of what they can take with them when traveling. This was quite the conundrum for me when I initially traveled with celiac disease. When we went to visit friends, I always went shopping beforehand to buy my essentials for the trip. I’m not one that believes people should bend over backwards to cater to my auto-immune disease. I’m an adult, I can meet my own needs.

With all this said- I asked this question on the Pretty Little Celiac Facebook page and compiled a list of items perfect for road trips or plane travel.

BTW- You CAN take food through airport security with you but not beverages. I’ve done it many times while competing, even bringing meatballs, asparagus and chicken in a carry on cooler. 

1. Rice cakes

2. Individual nut butter packets

3. Lara bars, Kind bars or other gluten free snack bars

4. Almonds or other nuts

5. Apples are the perfect road trip fruit. Bananas may work but could get bruised or squishy

6. Carrots, mini cucumbers or other sliced veggies

7. Glutino cereal bars

8. Kettle chips, Sweet potato chips, lentil chips, gluten free pretzels (not as nutritious or filling)

9. String or Baybel cheese

10. Gluten free crackers

11. Amy’s gluten free bunny crackers/cookies

12. Dried fruit

13. Tuna packets and individual packets of condiments

14. Gluten free protein powders

What’s in your bag that I missed? Let’s see how big we can make this list to prove to people there ARE things we can eat!