Probably celiac but also confused

[terrymouse]

I have an endoscopy booked for mid-September to test for Celiac. My gp seems convinced it is celiac and I should eliminate gluten right away, but the gastroenterologist I was referred to says if I'm totally gluten-free then they won't be able to detect celiac from the endoscopy, and I should load up on gluten 2 weeks before the test. So I guess I shouldn't eliminate gluten then? Or stop and start again closer to the appointment date. But I'm also on the wait list in case they can get me in sooner, because I'm losing weight. I don't want to have to go back and do it over again if I can help it. They also were unsure if there isn't something else wrong with my stomach, so that's a possibility. I don't have the details but from what I understood my blood tests results were positive but on the low end. So I'm getting mixed up here, do I go gluten-free or not? Would 2.5 months of being gluten-free make any noticable difference? 

[trents]

Welcome to the forum, @terrymouse!

Your GI doc is correct. Going gluten free now will allow healing to occur in the villous lining of the small bowel such that the endoscopy/biopsy may not show the damage to the villous architecture that is characteristic of celiac disease. Since your celiac blood antibody tests results are on the low side and don't "scream" of celiac disease I think it is important to go forward with the endoscopy/biopsy while still consuming gluten to ensure it will not be a wasted effort. The last thing you want is to have two different test modalities that unnecessarily contradict one another. So, unless the continued consumption of gluten poses an immediate and significant threat to your health, my advice is to (excuse the pun) "gut it out" until the endoscopy/biopsy happens.

There is also the option of temporarily going gluten free and then undertaking a "gluten challenge" in the weeks leading up to the appointment in September. Current guidelines for the gluten challenge are the daily consumption of at least 10g of gluten (the amount found in about 4-6 slices of wheat bread) for at least 2 weeks leading up to the day of the procedure. But I would certainly give it longer than two weeks to be sure. And in view of the fact that it could happen sooner if there is a cancellation, I would encourage you to not go gluten free until after the procedure if your health permits.

By the way, what are your symptoms? What led you to investigate celiac disease as the cause of your medical issues?

[terrymouse]

Thanks for clarifying! I'll put the gluten free thing on hold then.
In late december last year I suddenly started having digestive issues I never had before. My stomach started feeling tight most of the time, I got full very quickly, little to no appetite, constipation, I started to feel ill after eating - sometimes a stomach ache, sometimes nauseous, or lightheaded, or heart beating fast. Some things worse than others, I started avoiding fatty foods in general because they made me throw up . I haven't had issues with food like this before, so this is all new to me. I started losing weight because eating was such a chore.
I hadn't considered it could be celiac, but my GP added it to the list of things to test for and then referred me to the GI specialist when the results came back positive. They also found a large gallstone, which was causing me pain in the pit of my stomach, so I had my gallbladder removed in march. The pain is gone but otherwise everything else, the tightness and sensitivity and lack of appetite remains an issue, and I'm still losing weight. I was around 200 lb in december, right now I'm 152 lb. 

[trents]

A classic case of more than one medical problem going on at a time. We often forget that can happen.

Are you concerned about your weight loss? Is your current weight too thin for your height, gender and general build?

[terrymouse]

I'm 5'2" so it's weight I could afford to lose. I guess what's concerning is that it's not on purpose, I haven't been active because I don't have much energy, and it's been steadily going down since I started keeping track of it. So I'm not too worried about where I'm at right now, but it's something I'm keeping an eye on.

[trents]

Lot's of folks would trade places with you with regard to the unintentional weight loss.

Seriously, though, I would be concerned about vitamin and mineral depletion due to malabsorption in the small bowel. One thing you can do now to address that which will not jeopardize the accuracy of further testing for celiac disease would be to start taking some high potency vitamin and mineral supplements. Make sure they are all gluten free if you will continue to use them - after diagnosis, that is. Wheat starch is sometimes used as a filler in pills. A multivitamin may not be potent enough. So, I would go for a B-complex, magnesium glycinate (the form of magnesium is important for good absorption and to prevent a laxative effect), zinc picolinate, and D3 (around 5000IU daily). These are supplements we routinely recommend on this forum to newly diagnosed celiacs and in view of your dramatic weight loss it would likely be appropriate for you as well. It often takes around 2 years for the villous lining of the small bowel to fully heal after going gluten free and until then, nutrient absorption will be compromised. The small bowel is the section of the intestines where all of our nutrition is taken up.

Keep us posted.

Edited June 15 by trents

[knitty kitty]

@terrymouse,

I agree that you may be suffering from nutritional deficiencies already.  Get tested for nutritional deficiencies before supplementing, otherwise the vitamins you're taking can mask a deficiency.  

Symptoms that you have are similar to what I experienced with malabsorption of Celiac Disease.  I would lose my appetite; if I did eat, I got full quickly, and had nausea, dizziness, trouble digesting fats, abdominal pain, and heart palpitations.  I had unintentional weight loss.  I also had my gallbladder removed.  I was deficient in the essential nutrients, especially Thiamine and the other B vitamins.

Ask for an Erythrocyte Transketolace test.  Thiamine deficiency symptoms may appear first because our body can't store it for more than three weeks and our metabolic needs for Thiamine increase when we're physically sick or emotionally stressed, so we can become depleted quickly.  Thiamine deficiency symptoms include gallbladder problems and all the ones list above.  Thiamine and the other B vitamins are needed to digest our food and turn it into energy for our body to function.  Gastrointestinal Beriberi is frequently overlooked by doctors.  

Ask for a DNA test to check for any known genes for Celiac Disease.  You have to have at least one gene for celiac disease to develop.  You don't have to be eating gluten for a DNA test.  Your genes don't change.  If you don't have any celiac disease genes, you can focus on other reasons for your illness.  If you do have celiac disease genes, with your positive blood test results, you, your doctors and nutritionist can focus on correcting nutritional deficiencies which will help you heal and feel better.  

[terrymouse]

Update: I got a call on Monday from the GI doctor's office, they had a cancellation and an appointment opened up for Tuesday. Not much time to prepare, but I went ahead and did it anyway. I haven't been gluten free at any point, but I haven't really loaded up as much as was recommended, either. It takes another 6-8 weeks to get the results, so I'd rather get it done now. I just hope it will be enough and I won't have to try again and delay it even longer.

Thanks for the recommendations and thoughtful responses, much appreciated. I will be following up with my GP soon to check for nutritional deficiencies while I'm waiting on the test results.

 

[trents]

Keep us posted.

[N00dnutt]

Hi @terrymouse

Generally, after a Celiac Seriology Blood Test, if something anomalous shows up, the follow-up will be a Gastroscope.

Your Endocrinonogist will be looking to see if you still have (Villi). Villi are Tenticles/Hairs that are prevalent throughout the small intestine; their function is to extract nutrients, vitamins and water. The absense of Villi will typically result in watery bowl movements, other telltale signs being, lethargy, feeling cold, always hungry (valuable nutrients are being bypassed).

I was diagnosed 12 years ago. One other thing associated with an AutoImmune Disease, they generally have a companion, in my case I have Hypothyroidism, other may have Hyperthyroidism (Hashimoto's). Others may get Eczema, or some other skin disorder, usually due to not getting the proper nutrition your body needs.
 

HTH

Mark.

 

[knitty kitty]

HypOthyrOidism is HashimOtO's thyrOiditis. 

HypeRthyRoidism is GRaves disease.

Edited July 4 by knitty kitty
Typo correction

[N00dnutt]

@Knitty_Kitty Noted with appreciation.