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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.
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Going To The Doctor...
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5 posts in this topic

Hi friends. I'm going to a new doctor to get a second opinion. I've been gluten free almost 5 months and am still experiencing gastrointestinal symptoms on a very strict gluten free diet. Some symptoms include extremely fatigued, rapid and irregular BM's and flatulence. This stinks. I'm grateful for any words of wisdom. Thank you.

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Have you been tested for dairy? soy? Corn?

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Have you been tested for dairy? soy? Corn?

No, ma'am, I haven't. I've been off of dairy, too. I have wondered if it could be corn or eggs...not sure.

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For the fatigue; have you had your iron and ferritin checked? How about your thyroid? Vitamin D? All of these can contribute/cause extreme fatigue.

As for the other symptoms things to consider: gallbladder problems, other food intolerences, SIBO, yeast, possible CC? Just food for thought.

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Mamaw is right--other allergens could be additional culprits.

You should also look into possible additional sources of being trace glutened too. I had to stop using my oven since the self cleaning cycle did not work. I bought a largish dedicated toaster oven to replace it. I also had to stop using lip balm (I use petroleum jelly), change my lipstick, and change out all my soaps and lotions, including what I use to wash my floor with and dishes. I also had to start washing my hands a lot before putting them to my face since one can get trace gluten from shaking people's hands as well as from doorknobs etc. etc.

Finally, after much time, I discovered I am also salicylate sensitive. This is a huge category since salicylates are in a lot of fruits and vegetables as well as nuts, seeds and herbs (including spices). Much like aspirin, it protects the plants from the elements. It can mess with a person's intestines as well as the nervous system, liver and skin. It too damages the villi in the intestines (i.e., besides the gluten). Corn and coconut by the way are high in salicylates, whereas brown rice is safe. Am hoping you don't have this. Though if you do have this condition it is far better to know about it than not. If you decide to investigate this possibility, its best to drink spring water since filtered water usually filters through coconut based charcoal.

Might be best to keep a food diary and note how you feel before and after you eat. Taking your pulse before and after and then a couple of hours after you eat can also give you some good clues. Going on a simplified basic diet can help initially to make your determinations less complicated.

Go luck in your detective work!

Bea

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    • I do have a referral to another GI at one of the top hospitals in North Carolina. I'm just waiting on the call to schedule an appointment. 
    • OK, that's good news, not the milk in the cabinet, that you've not cut gluten! Stick with it and wait for the test results. If they're positive then it will be another endoscopy, but this time with the biopsies. If negative, don't despair. Your GP may still refer you but if not you can try the gluten free diet for yourself. Keep a food diary and follow all the instructions here in the newbie thread and establish for yourself if it's the problem. If it is, don't stress overmuch about a diagnosis. I tested negative but gluten is a big problem for me and many others. The good news is the diet worked for me and it may still for you. In the meantime, try and eat as well as possible and take a good quality B vitamin and multi vitamin to try and boost those levels. Good luck!
    • No I havent cut out any gluten. I cut out stuff I knew hurt me. Like watermelon. Which sucks because I LOVE watermelon.  There are days that I cant even get words out. I can think a sentence and just cant get it out. I constantly stumble and feel drunk in my head. I'm hoping these daily shots of B12 I'm getting will start to help some.  Yesterday I put the milk in the cabinet    
    • Hello and welcome Its good that your doctor has ordered the celiac test, not sure why your GI didn't, as you say perhaps he was presupposing IBS... You mention cutting out food, you haven't tried cutting gluten yet have you? That can throw the results of any testing. You are best to stay on it for now at least, once testing is done it would be worth trying the gluten-free diet regardless of results. Dont lose heart, be persistent, get those answers and best of luck!
    • Hey Kez and a belated welcome to the forum  Sorry your post didn't get an answer, sometimes one slips through.  Re your results. The number prefixed with the H is the level of antibodies detected. The second figure should be the range beyond which the test is considered positive. Usually that's in the form of a range like this: So for the quoted test above a figure more than > 10 would be positive. I just can't tell from your post what the range is.  I suspect less than 7 was negative so you've either scored a weak or a full positive depending on the scale. Have you posted all the info that was on the test?  Here is a little more detail about what each test is looking for if you want to know the science: http://glutendoctors.blogspot.co.uk/2009/01/interpreting-lab-work-gluten-sensitive.html Coeliac can certainly play havoc with your skin. In my case I found dairy was a big offender as well. Best advice I can give you is to stay eating gluten till your endoscopy. Ask your health provider if its possible to call asking for cancellations if you want an appointment sooner. But stay eating gluten so you get an accurate result. If its negative, try changing your diet regardless. 6 months without gluten and dairy may sound scary but if it cures your health issues you'll never look back. Best of luck!
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