Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

New Here, Have Some Questions

Barki

Recommended Posts

Barki Newbie
Barki
Posted

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?

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


psawyer Proficient
psawyer
Posted

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.

cassP Contributor
cassP
Posted

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 :)

Barki Newbie
Barki
Posted
  • Author

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)

cassP Contributor
cassP
Posted

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:

Open Original Shared Link

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,666
    • Most Online (within 30 mins)
      7,748
    bailey1023
    Newest Member
    bailey1023
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Inkie
      Tea Bags and Gluten

      By Inkie · Posted

      Thank you for the information ill will definitely bring it into practice .
    • Scott Adams
      Tea Bags and Gluten

      By Scott Adams · Posted

      While plain, pure tea leaves (black, green, or white) are naturally gluten-free, the issue often lies not with the tea itself but with other ingredients or processing. Many flavored teas use barley malt or other gluten-containing grains as a flavoring agent, which would be clearly listed on the ingredient label. Cross-contamination is another possibility, either in the facility where the tea is processed or, surprisingly, from the tea bag material itself—some tea bags are sealed with a wheat-based glue. Furthermore, it's important to consider that your reaction could be to other substances in tea, such as high levels of tannins, which can be hard on the stomach, or to natural histamines or other compounds that can cause a non-celiac immune response. The best way to investigate is to carefully read labels for hidden ingredients, try switching to a certified gluten-free tea brand that uses whole leaf or pyramid-style bags, and see if the reaction persists.
    • Scott Adams
      Inconclusive results

      By Scott Adams · Posted

      This is a challenging and confusing situation. The combination of a positive EMA—which is a highly specific marker rarely yielding false positives—alongside strongly elevated TTG on two separate occasions, years apart, is profoundly suggestive of celiac disease, even in the absence of biopsy damage. This pattern strongly aligns with what is known as "potential celiac disease," where the immune system is clearly activated, but intestinal damage has not yet become visible under the microscope. Your concern about the long-term risk of continued gluten consumption is valid, especially given your family's experience with the consequences of delayed diagnosis. Since your daughter is now at an age where her buy-in is essential for a gluten-free lifestyle, obtaining a definitive answer is crucial for her long-term adherence and health. Given that she is asymptomatic yet serologically positive, a third biopsy now, after a proper 12-week challenge, offers the best chance to capture any microscopic damage that may have developed, providing the concrete evidence needed to justify the dietary change. This isn't about wanting her to have celiac; it's about wanting to prevent the insidious damage that can occur while waiting for symptoms to appear, and ultimately giving her the unambiguous "why" she needs to accept and commit to the necessary treatment. This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
    • Scott Adams
      Medication

      By Scott Adams · Posted

      Welcome to the community! Generally, for a gluten challenge before celiac disease blood tests, Tylenol (acetaminophen) is considered safe and should not interfere with your antibody results. The medications you typically need to avoid are those like ibuprofen (Advil, Motrin) or naproxen (Aleve) that can cause intestinal irritation, which could potentially complicate the interpretation of an endoscopy if you were to have one. However, it is absolutely crucial that you confirm this with either your gastroenterologist or your surgeon before your procedure. They know the specifics of your case and can give you the definitive green light, ensuring your surgery is comfortable and your celiac testing remains accurate. Best of luck with your surgery tomorrow
    • Xravith
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By Xravith · Posted

      Thank you for the advice. I’ve actually never checked for nutritional deficiencies, but for as long as I can remember, I’ve always taken vitamin and mineral supplements — otherwise my symptoms get worse. This week I stopped eating gluten to confirm whether my symptoms are really caused by it. Starting next week, I’ll reintroduce gluten — it’s sad to go back to how I was before — but at least I’ll be able to take the necessary tests properly. I think the diagnostic process will be long, but at least I’m happy that I finally decided to address this doubt I’ve had for years.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.