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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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

New Here, Have Some Questions

5 posts in this topic

I'm new to this forum and have some questions for all of you with more experience. Briefly, I'm a Type I diabetic, have hypothyroidism and asthma. My cousin let me know that they'd recently discovered that she has celiac, as well as another cousin, all following the one bloodline. So since I guess statistically I'm at a higher risk I had bloodwork done. I don't know what test the dr ordered; I requested a celiac screening. The blood test came back negative, which from my research is not conclusive one way or the other. (For instance, my cousin had 2 negative blood tests, but her biopsy was positive. Another friend can't get a definitive dx with any test and she had a host of symptoms if she ingests gluten.)

I don't seem to have the glaringly obvious symptoms. Occasional intestinal issues, some other possible symptoms like depression, anxiety, some slight edema, fatigue, etc. All of which had previous been attributed to other things. I've been gluten and dairy free (oh, I already have a long history with dairy and know that I don't do dairy well) for a couple of months. There have been some times where I got some gluten (malt vinegar and other small exposures) and my kitchen is not 'kosher' in that I still share utensils/cutting boards/toaster, etc. I'm mostly gluten free, I guess. My intestines seem to be like they always have been mostly fine with the occasional hiccup (could this be because I'm still sharing utensils?), but my blood sugars have been doing much better, and the edema, anxiety and depression all seem to be some better. My asthma had been doing MUCH better, but we've just had a bit of cold weather and people are using wood stoves again, so have had to take some of my inhalers again this week.

I'm not even sure what my questions are! Sorry. I need some input on things to consider, I guess. I know that statistically a relatively large amount of people with celiac have no symptoms, and some have very few and more mild symptoms. I also know that statistically speaking a fairly large number of Type I diabetics are also celiac. However, I don't want to have an intestinal biopsy, since medical procedures are difficult for me to do (the diabetes/asthma thing)and there is always the possibility of a false negative there, too. Since my symptoms are not as obvious, should I pursue this further or not?

Thoughts? Suggestions?


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Welcome to the board. :)

If you have celiac disease, "mostly" gluten-free won't cut it. Every bit of gluten does damage. You also heal continuously on a gluten-free diet. What you need to do is keep the rate of healing running faster than the damage caused by accidental ingestion of gluten. Deliberate ingestion of gluten will set you back in the race. Any value you perceive from it is completely false.

I am a type 1 diabetic. My repeated hypoglycemic incidents led me to ask questions. Sometimes, after food, my blood sugar would rise, but sometimes it would continue dropping. What the **?

Some carbs are absorbed in the stomach. I was getting those ones (juices, fruits), but others do not get absorbed until they are in the intestines (complex carbs such as bread).

It took years, and a random discovery by my wife, to realize that: (1) there is a correlation between type 1 diabetes and celiac disease; and (2) all of my mystery symptoms could be caused by celiac disease.

My PCP told my that is was a rare childhood disease, but agreed to have me tested for it. I had a very strong positive on the biopsy. I knew then what was causing my sickness, and have never intentionally eaten gluten again.


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Barki- had you already been eating "mostly gluten free" at the time of your bloodwork?? this would make your tests very unreliable.

also, there are several different tests that can lead to a celiac dx... plus there's false negatives.

celiac and diabetes 1 have been linked before- dont give up on this thought process you're on-> MOST of us have experience with negative or inconclusive results.

good luck :)


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When I say "mostly gluten free" I mean that I have not knowingly ingested anything containing gluten for the last two months. I wasn't super vigilant with the peanut butter, and since it's a communal container for family use (and I have kids...) I'm thinking I may have gotten some exposure there. I've been trying to stick to metal utensils, I've been careful about cross contamination, etc., but there's no way I'll ever feel like I can say with supreme confidence that I've not had ANY gluten exposure. (And I'm wondering about some of the stuff that is even labeled as "gluten free"...one had soy as an ingredient, which made me wonder.)

No, I wasn't gluten free prior to the blood draw. I quit after my test was done.

As a diabetic I've not notice anything like having low blood sugars at odd times or anything like that. As I mentioned, ALL of my (possible) symptoms can, and have, been explained by other things.

I'm tired, though, of having everything chalked up to the diabetes/thyroid and it never resolves, no matter what I do. Fatigue and edema are two relatively mild problems (in the big picture)that I can't get resolved. And I do work on it! Since I've been eating gluten free, though, I've had more energy and my poor puffy feet and legs are doing better.

I guess I'm just a little frustrated because celiac seems to be, for some people, a bit hard to pinpoint. It's tough to talk with people and the medical professionals I deal with when I don't have some whiz-bang, concrete, 100-proof something to point directly to celiac. Nope, no tummy pain, no unexplained weight loss (I WISH!), nothing like a nice trail of definites to hand out and back up my choice to go gluten/casein free. I suppose I'll stick it out until my next dr. appt and see what my most recent labs suggest. UGH! If only the human body wasn't quite so complex! (...but then, maybe that wouldn't be so good, either! :D)


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untill you DO get clear answers on a Celiac diagnosis or not- you should follow your gut and stay gluten free-

i just saw this tonight on facebook-> (i follow greenmedinfo on twitter & facebook- and they just started a new site exclusively for wheat & gluten)... they always have informative articles. this one is about wheat & diabetes:



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    • Thank you! That was the thread I already found and am reading my way through.
    • Thanks for replying! I actually got a blood test for everything and it all came back normal. However, I was slightly anaemic which my doctor said should go back to normal in a few months. I guess I'll go back and get another or speak to the doctor if I am unsure. When I first went gluten free I was still very hungry and my gluten free food also didn't fill me up. I got the same dizzy spells and had to have snacks with me! However, now on the 4th month its gone the complete other way. Anyway, thank you for your feedback and help.
    • You have a few options. If your in a restaurant or cafe and want a safe meal, just declare yourself celiac or alternatively say 'no gluten please, it's a medical requirement' if you're uncomfortable doing this. The objective is for them to treat your being gluten free seriously and distinguish yourself from hipster part time fad dieters.  With friends you can develop a shorthand answer: 'I worked out myself I had a problem with gluten and now sadly the tests won't work. I know I either have celiac or non celiac gluten sensitivity, either way I have to be gluten free for life from here on out. No exceptions, its just not worth it' and stick to that line till they're bored senseless by it and stop asking.  Consistency is the key to this and will help you immensely, whilst people think you can be persuaded they'll try to do so and you'll constantly find your willpower being tested. Once they realise that it's just not an option for you they'll stop and that will make it easier for you. Read up on NCGS here if you're interested: https://www.celiac.com/gluten-free/topic/117969-non-celiac-gluten-sensitivity-a-resource/   Best of luck      
    • You might be like me and need to get a vitamin and mineral panel blood test.  And make sure it includes iron.   We both might be deficient in certain vitamins/minerals.  My medicals bills have been so high I've put it off and just started taking a multivitamin instead.  But I'm not sure it has it in what I really might be deficient.   So I'm going to spend more money and get a vitamin and mineral panel blood test. Even at my age I have high metabolism.   Gluten free meals only fill me up for 2-3 hours so I have a backpack with me everday and have gluten free snacks to hold me over.   My weight went from 168 to 161 my first month gluten free.  But it seems to have stabilized and might be going back up again a little.  I'm in the start of my 3rd mo. being/trying to be gluten free.   If I am hungry for too long I kinda get light headed and dizzy so I bring gluten-free snakes with me. I drank a bottle of Ensure + my first month to help keep weight on but it didn't seems to agree with my stomach.   It might of been my body trying to adjust to the new gluten free diet that caused that issue.  
    • Thanks, cyclinglady.   That's encouraging to know that people can have a relatively normal life with Crohn's.   I have a co-worker whose in his 50s with Crohn's.  I understand he's had it most of his life.  Lots of surgeries, iron infusions and ongoing pain.   My GI appointment isn't for another three weeks.   I had an abdominal CT scan 9 years ago for similar issues and it was clean.   I'm fairly old for Crohn's --I'm in my mid 40s-- and understand that it mostly affects people in their teens and 20s.  But, there are always those outliers. Given that both my brother and his son have Celiac...I'm hoping(?) for the less destructive disease.   
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