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wildsurf

T1 Diabetic, Not Formally Diagnosed Celiac, Going Gluten Free

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HI

I'm 18 and for as long as I can remember I've had weird symptoms. At age 11 I was getting exhausted all the time, leg aches, migraines and had raised liver enzymes. I also kept getting Keratosis Pilaris on my legs but I didn't know what it was. 

Age 14 I developed T1 diabetes, they screened for Celiac= negative. I didn't have any GI trouble then of much note.

A few years later and things are very different, I have lost weight continuously for 6 months now. I have also felt just generally rubbish. Symptoms include persistent thrush, tooth pain, weight loss, Keratosis Pilaris suddenly coming back, yellow loose stool, gas, ulcers, nerve pain, migraine's, depression and anxiety. You name a Celiac symptom, and I will probably have it :mellow: I think it was the weight loss that has really worried me though. And the fact that I seem to feel sick particularly after eating pretty much anything. Been to lots of doctors, and changed lots of different things. Although some things have got better, I realise the only common factor that has not changed is my gut health. This has been consistently bad and I know this is why I am still not feeling better. Itchy rashes after eating bowls of pasta etc..

My stool is more often than not yellow, loose and unpleasant. If it is not yellow, which is rare, it is loose. I have had a Celiac test 7 months ago when my hard core symptoms were just beginning. It was negative, but I was beginning to avoid wheat at that moment anyway and did not know that I was supposed to eat more before the test. 

My smooth muscle antibody test was positive, and although my liver enzymes don't show serious problems, they do show some liver stress. This makes me remember back to when I was a kid and this was happening for no obvious reason. 

I avoided wheat for four weeks and began to put on weight. I'm not sure if this was just coincidence, but i did notice a change. I then went back on wheat, after being told by doctors that based on my bloods I did not have Celiac. Bad idea. I am now at my skinniest and have been Gluten Free for 4 weeks, tee total. I am also avoiding dairy as I find this makes my stools smell even more unpleasant. 

 

Does it sound like I have Celiac or something else? How long will it take me to feel better?  :)

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You need to ask for another FULL CELIAC PANEL. just because you we're tested years ago and negative, doesn't mean you are negative today.

If they won't test you and you have no alternative, then go gluten-free and save your life. Literally.

Everyone differs on how long it takes to feel better. Just start doing it, then tackle each issue as it arises. You saw changes with 4 weeks last time, hopefully it will be that fast or faster this time.

Good luck to you, and raise holy hell to get new tests. You are certainly justified to want them.

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Welcome to the board.

 

To me, it does sound like celiac disease or posssibly non-celiac gluten sensitivity (NCGS), although I think it is more likely to be celiac disease because of your diabetes - there is a strong link there.

 

There are a few others around here who have celiac disease without positive blood tests, it was proven to be true through an endoscopic biopsy. You certainly could be one of those few, but unforunately the only way to tell for sure is to do the biopsy, and the only way to have an accurate biopsy is to be eating gluten in the weeks prior.

 

You don't need a biopsy to eat gluten-free though, and I think it's great that you have figured out the cause... it took me 20 years longer than you.  LOL I wish you the best with the gluten-free diet or in further testing if you decide to go that route.

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Here are some links that may be helpful:

 

http://www.cureceliacdisease.org/archives/faq/what-other-autoimmune-disorders-are-typically-associated-with-those-who-have-celiac-disease

 

http://www.cureceliacdisease.org/archives/faq/once-ive-been-diagnosed-with-celiac-disease-and-have-begun-a-gluten-free-diet-will-it-prevent-other-autoimmune-disease-such-as-diabetes

 

http://www.cureceliacdisease.org/archives/faq/do-diagnosed-celiacs-on-a-gluten-free-diet-see-an-increased-rate-of-type1-diabetes

 

I would push for getting tested for celiac again before going gluten free.  just my opinion  :)  since you already have another autoimmune disease and autoimmune diseases like to have buddies, I think it would be beneficial to get the necessary testing done before going gluten free.  It would be easier than doing a gluten challenge later.  

 

Here are the tests that a PCP or GI can order.  Push to get the complete panel done.  

Comprehensive Celiac Panel:

DGP iga/igg

ttg iga/igg

EMA

Total iga serum-this is a control test to make sure you make enough iga to validate the other testing

check out page 12 in this report for testing information:

http://www.worldgastroenterology.org/assets/export/userfiles/2012_Celiac%20Disease_long_FINAL.pdf

 

Good luck!

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