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T1 Diabetic, Not Formally Diagnosed Celiac, Going Gluten Free

wildsurf

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wildsurf Newbie
wildsurf
Posted

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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pricklypear1971 Community Regular
pricklypear1971
Posted

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.

nvsmom Community Regular
nvsmom
Posted

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.

powerofpositivethinking Community Regular
powerofpositivethinking
Posted

Here are some links that may be helpful:

 

Open Original Shared Link

 

Open Original Shared Link

 

Open Original Shared Link

 

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:

Open Original Shared Link

 

Good luck!

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    • MI-Hoosier
      Test uncertainty

      By MI-Hoosier · Posted

      Thanks again. My mom was diagnosed over 50 years ago with celiac so grew up watching her deal with the challenges of food. I have been tested a few times prior due to this but these results have me a bit stunned. I have a liver disease that has advanced rapidly with no symptoms and an allergy that could be a contributing factor that had no symptoms. I guess I’ll call it lucky my Dr ordered a rescreen of a liver ultrasound from 5 years ago that triggered this or I would likely have tripped into cirrhosis. It’s all pretty jarring.
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    • trents
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      By trents · Posted

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    • MI-Hoosier
      Test uncertainty

      By MI-Hoosier · Posted

      Thank you for the response and article. I was placed on the Mediterranean diet and been on that now for about 3 weeks. While not gluten free I am eating very little bread or anything with gluten ie a slice of whole wheat bread every couple days so assume that would cause issues now with a biopsy.  With the condition my liver is in I am unsure moving back to higher bread consumption is ideal.  In this scenario would my test results be enough to assume positive Celiac and just move forward gluten free?
    • trents
      Test uncertainty

      By trents · Posted

      Welcome to the forum, @MI-Hoosier! You are operating on a misconception about your "mixed" test results. You only had two celiac disease diagnostic tests run out of six that could have been ordered if your doctor had opted for a complete celiac panel. It is perfectly normal to not test positive for all possible celiac disease diagnostic tests. That is why there is more than one test option. It is the same way with other diagnostic testing procedures for many or most other diseases. Generally, when diagnosing a condition, a number of different tests are run and a diagnosis is arrived at by looking at the total body of evidence. The tTG-IGA test is the centerpiece of celiac disease blood antibody testing and the one most commonly ordered by doctors. You were strongly positive for that test. It was not an unequivocal result, IMO.  Having said that, it is standard procedure to confirm a positive celiac disease blood antibody test result with an endoscopy/biopsy which is still considered the gold standard of celiac disease diagnosis. Had your tTG-IGA been 150 or greater, your doctor many have opted out of the endoscopy/biopsy. The absence of GI distress in the celiac disease population is very common. We call them "silent celiacs". That can change as damage to the lining of the small bowel worsens. Elevated liver enzymes/liver stress is very common in the celiac population. About 18% of celiacs experience it. I was one of them. Persistently elevated liver enzymes over a period of years in the absence of other typical causes such as hepatitis and alcohol abuse was what eventually led to my celiac disease diagnosis. But it took thirteen years to get that figured out. Within three months of going gluten free my liver enzymes were back into normal range. Thank goodness, there is more awareness these days about the many long fingers of celiac disease that are not found in the classic category of GI distress. Today, there have been over 200 symptoms/medical conditions identified as connected to celiac disease. It is critical that you not begin a gluten free diet until your endoscopy/biopsy of the small bowel is over. Doing so before that procedure will invalidate it because it will allow healing of the small bowel lining to begin. Here is a link to an article covering celiac disease blood antibody testing:  
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