My Experience with the Gluten Challenge

When my  new GI doctor told me I needed to start consuming gluten again to get an accurate diagnosis, I was immediately confused and conflicted. For 2 years I’ve mastered the art of living gluten-free and wasn’t even sure I wanted to go this route but I wanted to get answers so I agreed. That was in October right before we moved to Virginia.

I finally got into a GI doctor here, Dr. Solomon Shah in Fairfax, VA and was very impressed by his knowledge of both celiac disease and food sensitivities. I was instructed to consume way more gluten each day for 2 weeks up until my upper endoscopy appointment. If you follow me, you know I love soft pretzels. That’s basically what I’ve been eating several times a day, along with my regular gluten-free meals.

He also instructed me to eliminate all dairy products due to the slight possibility that it may be dairy and not gluten as the culprit for my body. Since I eliminated lactose a while back, it wasn’t that difficult for me to cut the rest out. Trying to read labels for dairy seems much easier.

For the past 14 days, my body feels like it’s in a sausage casing and any push on my skin is bloated and puffy. I can’t wear my wedding rings. My ankles have some mild edema going on and my face is abnormally bloated. My stomach just hurts and I’m not sleeping well. There is this overall sense of brain fog that I can’t seem to shake and I’m literally exhausted. Although part of the exhaustion is from my increase in workouts, but we can talk about that on a different post.

My arm has had a lovely rash on the inside of my right elbow and I’ve been experiencing an abnormal amount of heartburn. My joints feel extra achy and I’m getting really sore after my workouts.

Could this rash be from the gluten challenge?
Could this rash be from the gluten challenge?

Yesterday I had my endoscopy. It doesn’t really matter how many times I go for these procedures, I still get nervous about the anesthesia. My right arm has the perfect vein for IV’s and blood draws but the nurse insisted on using the top of my right hand. I know from experience that this is a bad spot for me. My tiny little veins are a challenge and I’ve struggled with that spot in times past. The nurses insisted and I let her try my hand. Well, I never had that much pain from an IV start in my life. Even my husband said my hand squeeze hurt him and he knew by the way my body was writhing around in the bed that it had to be painful. I know the nurse felt so bad but I warned her! The next stop was the spot I asked her to use in the beginning and it went in without a hitch. Moral of the story? Patients know what they are talking about!

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Bracelets for my Upper Endoscopy

After the procedure I don’t remember much but I do know I was tested for something called h. pylori due to some gastritis and Barrett’s esophagus along with the celiac biopsies. Call me weird but I’m fascinated by the pictures of my innards! The results will come in 3-4 weeks and I should finally have some confirmation one way or another.

So, what’s the point of me going through all of this? Why did I do the gluten challenge? Why didn’t I just accept the celiac diagnosis? These are all great questions.

I guess for me I feel like I’ve come this far to not have a conclusive answer. I share my experiences on here and believe I owe it to all my readers to know that even I continue to struggle years after my diagnosis. I run into challenges associated with diagnosis and am looking for answers to more questions about not feeling 100%.

Don’t be discouraged into thinking you are the only one fighting this battle or having difficulties finding answers… because you aren’t! We are all in the same boat and the only way to get through the rapids is to row together.

Effective today, I am 100% gluten-free and lactose free. I will be for the rest of my life. I did the gluten challenge so I could confidently say I tried everything in my power to get the correct results. The results may be inconclusive but I know for a fact that gluten makes me sick, especially after my gluten challenge. And to me… that’s all that matters.

Should you do a gluten challenge? This is a tough question and a decision you will need to make with your medical provider. I can’t make that decision for you, I can only share my story and let you know my experience with the challenge. I will take this time though to re-emphasize the importance of waiting to eliminate gluten from you diet until all of your testing is complete!

If you’ve done the challenge and are willing to share your story, please feel free to post it in the comments section. That’s what makes this community so great is the ability to share our individual stories and let others see they aren’t alone.

Until next time.

Comments

  1.  Sue Rice says:

    After 5 months of becoming more and more ill, weight loss of 30 pounds (1/5 of my body weight at the time) in 3 months, liver complications, gastritis, non-specific colitis, rectal ulcers (diagnosed via endoscopy and colonoscopy – but no test for celiac was done) and my family doctor closing practice, I was left alone and on the verge of being hospitalized. I went on a waiting list for a new family MD and took matters into my own hands using natural herbs and totally clearing everything out of my diet.
    Long story short, a year and a half later, I am back up 20 pounds, survived multiple “be prepared for cancer diagnosis”, multiple specialist (gastro last with the longest wait time) It’s gluten, I’ve tried reintroducing it and I get the week or so of symptoms. Intense gastro pain, system back up, tremors, migraines – you name it.
    My gastro was angry that no one sent me to him first (the small local hospital I was referred to was sure I had cancer as I lost so much weight so fast) as I now have been gluten free for a year and he can’t tell if I am 100% celiac unless I do the challenge.
    I work a job I love that requires my brain to be sharp, I like my weight where it is, even though in high school I wasn’t this tiny – it’s much better than before) If I did the two week challenge by gastro feels it would be a HUGE setback for me. Even just a cross contamination now takes me totally out of commission.
    As I have been strict in my regime and I am textbook symptom wise, he is given me an out from the test as I have promised to never eat gluten. Should another test be developed, he’s going to call me.
    I applaud you for your undergoing of the challenge and very much like you stating it was your choice. My choice is to not put my body through it and continue gluten free as although a slow process, I am feeling better everyday. You are so right – don’t stop eating gluten until you’ve had the test is the best advice.
    Good luck with your results. Will be sending you positive vibes.

     

    •  Rebecca Black says:

      Sue, thank you so much for sharing your story! I think people being able to see that it is a personal choice to be made without judgement. These issues are so personal and I am grateful for your story. Hopefully, by just sharing our stories we can help people make their own decisions (with the help of their doctors of course!)

       

      •  Sue Rice says:

        No judgement is so important! We all know what it’s like to be “that customer” in a restaurant, “that guest” etc. So very much love what you are doing by providing a forum of support, empowerment to make your own best choices and a community in which to share.
        Hope you have a speedy recovery from the gluten-ing

         

  2.  R. Roth says:

    apart from the 3 to 6 months or more needed to remove inflammation caused by your gluten challenge from all your body tissue and rebalance hormones and electrolyte ratios, sadly duodenal spot biopsies may still miss villi changes and therefore provide an inconclusive diagnosis. More importantly, any results so obtained will not be able to discern if you are non-celiac gluten sensitive or eliac nor show any concurrent issues to celiac disease (associated casein, legume, ovalbumin, salicylic acid intolerances, beta carotene/interleukin-15 switch, etc.).
    Our patients have had the most beneficial answers/results (and newest research recommends this route over previous gold-standard of biopsy) by getting genetic B1 subgenes of HLA-DQ2 and DQ8 tested (e.g. Enterolab.com “Panel B”). Latter also provides answers as to “what else” to avoid.

     

    •  Rebecca Black says:

      Thank you for your comment. I’ve already had the DLA-DQ2 and DQ8 tests done. I based my decision on information I obtained while attending the International Celiac Disease Symposium along with collaboration with my doctor. Again, this is the choice I made for my body and am willing to work take the chance. I understand others are not. But, with so many people offering differing opinions on how to diagnose etc. I feel it’s important to share my story and my choice. I didn’t write this post to argue with people but rather to let them know this is a difficult journey regardless of the route they choose to find answers.

 

 

Ask Rebecca: Do I Need to get Tested for Celiac Disease?

This is a tough one for me. I believe everyone has the right to follow their own route for treatment. There are some people who can eliminate gluten, feel amazing and live on their lives as normal but I don’t think that’s the norm for this disease.

I believe if you can afford the testing or have health insurance, it is essential to get tested for a number of reasons. Hear me out..

1. You may or may not have celiac disease but I can almost guarantee you have some sort of nutrition deficiencies that can only be determined by blood work. This isn’t as simple as just taking a multi vitamin. The only way to adequately determine what vitamins you need is to get the proper blood work done to determine your individual needs.

2. Depending on your blood work, your doctor may order you to have a biopsy done to determine the level of damage caused to your intestines from the undiagnosed celiac disease. This again is something that can only be determined by a doctor.

3. The only way to determine these things is to keep consuming gluten and get your testing done. You cannot have the tests done if you eliminate gluten from your diet before your testing because the results will be skewed. So, it won’t do you any good if you eliminate gluten now and then decide in 3 months you want to get tested.

4. I’ve talked to many of you who say that you may not have taken the gluten-free diet and lifestyle seriously without the celiac disease diagnosis. This may or may not be an issue for you. For me, I can tell you that if I thought I could get away with a little bit once in a while, my situation would be very different right now because I would be eating a soft pretzel every couple of months to satisfy my needs. BUT, because I know I have celiac disease, this is completely out of my mind. I wouldn’t think of is.

5. Fertility problems are a major issue with people who have celiac disease. If you plan on having children or are struggling with fertility now, I would recommend you get tested ASAP for celiac disease. I would hate to see anyone not get tested, go through infertility treatments, only to find out they could have solved the problems strictly by living a gluten-free diet and managing deficiencies.

6. There is potential for undiagnosed celiac disease to cause other major health problems as we grow older and even contribute to bowel and other cancers. This is something for you to be aware of as you get older to monitor your health.

Do you have a different story? Why or why not did you choose to get tested? I want to hear about it!~

Ask Rebecca: How do I convince my family to get tested for celiac disease?

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This begins my new Monday segment of Ask Rebecca! I will pick one question per week from the Facebook page, messages and email and answer it to the best of my ability! Today’s question comes from Facebook – Judy Grover!!

“How do I convince my family to get tested for celiac disease?

Rebecca: I honestly don’t think there is any good answer for this. Just like anything else, your family has to be on board with thinking they have a problem and be willing to get tested. The testing is expensive and can be challenging to get an accurate diagnosis. If there are no obvious symptoms, the person is also less likely to spend the money on getting the testing done. My mom didn’t end up getting tested until I nagged her for months about asking her doctor. Then when she finally did ask the doctor, he gave her inaccurate information because he was not educated on the disease. He told her because she did not have diarrhea, she didn’t need to get tested. It wasn’t until after I gave her more detailed information about all the possible symptoms and encouraged her to get tested again that she finally completed the test. The doctor (whose results I believe are suspect) told her she did not test positive for celiac disease and she didn’t need to be concerned. Again, I don’t know what tests were run or if they were even checked correctly. So, that’s the only thing I can go on. What I would encourage you to do is the following:

  • Become as educated as you can be on the disease to explain the importance of getting tested. Without being able to explain the importance and why you think they need to be tested, it’s going to be a struggle to get them to do it.
  • Remember that not everyone has it in your family just because you do! We are quick to assume everyone has it or should get tested for it because we are diagnosed, when that’s not always the case.
  • Keep your family updated on your own medical journey. Don’t be overbearing about it or make constant digs because it’s likely to backfire.
  • Don’t forget that as adults, we have the right to get our own testing done. It’s our own health and bodies and we should do what we feel is right for ourselves and not anyone else. Haven’t you ever had someone tell you to get tested for this or that when you were struggling with your symptoms? Sometimes the shoe fit and you asked your doctor, but other times you felt you didn’t have the symptoms so it wasn’t worth getting tested. We should respect our family’s rights to do what they see fit with their bodies. We can’t control how or what they do! The only thing we can be sure of is that we are treating ourselves the way we believe is happy and healthy.

Did you successfully get your family to get tested? Please leave your story below!

 

How to find a doctor for gluten intolerance and celiac disease

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It’s hard for me to imagine 1 year ago this week I was sitting at Dr. Aukerman’s seminar thinking to myself, “maybe I do have a problem with gluten.”

After 20+ years of having issues, could this finally be the answer I was looking for that would solve all my bowel problems? Would this doctor really be able to finally solve the mystery? As a matter of fact, he did but only because I persisted in looking for answers.

I started Pretty Little Celiac a little over 4 months ago and I couldn’t honestly believe how fast it picked up in the gluten-free/celiac community. I’ve met hundreds of people struggling with the same exact symptoms but are unable to find their “Dr. Aukerman.” I get question after question from readers wanting to know how I finally was able to figure it all out and who helped me get there.

Let me give you my suggestions on how to go about this journey based on my own experience.

1. Don’t ever let someone tell you nothing is wrong if you believe otherwise. One of the most frustrating appointments I’ve had to date was with an allergist trying to find something wrong. There had to be something making me sick in my food so I went to get allergy tested. 100 back pricks later with NO results. Nothing! Not one thing came up as a problem during my test results. That doctor recommended I go to see a GI doctor but also told me that they really wouldn’t be able to figure out intolerances unless I went on a complete food restriction diet and then added foods in slowly. Well, I’d already been to several gastrointestinal doctors and just figured it was a wash.

2. Referrals – And when I say referrals I mean from friends and family that have had simliar problems and went to a doctor who they trust and finally helped them out. Doctors can refer to other doctors but do those doctors listen to their patients? Do those doctors actually take the time to spend with you so you know what is wrong? Do those doctors know about the bedside manner of their colleagues? All of these things are important. I knew my friend went to Dr. Aukerman and trusted him with her care. She also felt incredible since her diagnosis so of course I was going to check him out.

3. Google Searches – Make sure you look for several different terms when you are searching and you include a 50 mile radius for your search. Gluten intolerance doctor, celiac specialist, celiac gastrointestinal are some terms I would start with when researching online. Often these doctors have been reviewed online as well by other patients so that even cuts down on some stress of finding a new doctor.

4. Check with local gluten free or celiac support groups as to what doctors they like seeing and have helped them. Other people suffering from the same problems is the perfect way to start!

5. See if your local University has a celiac center or doctor specializing in the disease at the school. Specialists are often found at large medical centers like Universities because they can get money for research so they stick with places that will pay for those types of things.

**Do NOT take gluten out of your diet if you are going to be tested for celiac disease or gluten intolerance**

You need to keep everything the same prior to seeing any doctor so the tests can be done. If you start changing things prior to testing, it can seriously affect the ability to find out what is actually wrong.

How did you find your doctor? Leave a comment with a tip so others can get the help they need!