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
      133,192
    • Most Online (within 30 mins)
      7,748
    DenisC
    Newest Member
    DenisC
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • xxnonamexx
      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

      By xxnonamexx · Posted

      Please read: https://www.fda.gov/news-events/press-announcements/fda-takes-steps-improve-gluten-ingredient-disclosure-foods?fbclid=IwY2xjawPeXhJleHRuA2FlbQIxMABicmlkETFzaDc3NWRaYzlJOFJ4R0Fic3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHrwuSsw8Be7VNGOrKKWFVbrjmf59SGht05nIALwnjQ0DoGkDDK1doRBDzeeX_aem_GZcRcbhisMTyFUp3YMUU9Q
    • cristiana
      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      By cristiana · Posted

      Hi @Atl222 As @trents points out, there could be many reasons for this biopsy result.  I am interested to know, is your gastroenterologist concerned?  Also, are your blood tests showing steady improvement over the years? I remember when I had my last biopsy, several years after diagnosis, mine came back with with raised lymphocytes but no villous damage, too! In my own case, my consultant wasn't remotely concerned - in fact, he said I might still get this result even if all I ever did was eat nothing but rice and water.   My coeliac blood tests were still steadily improving, albeit slowly, which was reassuring.
    • trents
      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      By trents · Posted

      Welcome to the celiac.com community, @Atl222! Yes, your increased lymphocytes could be in response to oats or it could possibly be cross contamination from gluten that is getting into your diet from some unexpected source but not enough to damage the villi. And I'm certain that increased lymphocytes can be caused by other things besides celiac disease or gluten/oats exposure. See attachment. But you might try eliminating oats to start with and possibly dairy for a few months and then seek another endoscopy/biopsy to see if there was a reduction in lymphocyte counts. 
    • Scott Adams
      Brown Rice Vinegar (organic) from Eden Foods is likely gluten free

      By Scott Adams · Posted

      This is a solid, well-reasoned approach. You’re right that “koji” by itself doesn’t indicate gluten status, and the risk really does come down to which grain is used to culture it. The fact that you directly contacted Eden Foods and received a clear statement that their koji is made from rice only, with no wheat or barley, is meaningful due diligence—especially since Eden has a long-standing reputation for transparency. While the lack of gluten labeling can understandably give pause, manufacturer confirmation like this is often what people rely on for traditionally fermented products. As always, trusting your body after trying it is reasonable, but based on the information you gathered, your conclusion makes sense.
    • Scott Adams
      nothing has changed

      By Scott Adams · Posted

      Seven months can still be early in celiac healing, especially if you were mostly asymptomatic to begin with—symptoms like low iron, vitamin D deficiency, nail changes, and hair issues often take much longer to improve because the gut needs time to recover before absorption normalizes. A tTG-IgA of 69 is not “low” in terms of immune activity, and it can take 12–24 months (sometimes longer) for antibodies and the intestinal lining to fully heal, particularly in teens and young adults. Eating gluten again to “test” things isn’t recommended and won’t give you clear answers—it’s far more likely to cause harm than clarity. Weight not changing is also very common in celiac and doesn’t rule anything out. Please know that your frustration and sadness matter; this adjustment is hard, and feeling stuck can really affect mental health. You deserve support, and if you can, reaching out to a GI dietitian or mental health professional familiar with chronic illness could really help you through this phase. This study indicates that a majority of celiacs don't recover until 5 years after diagnosis and starting a gluten-free diet: Mucosal recovery and mortality in adults with celiac disease after treatment with a gluten-free diet However, it's also possible that what the study really shows is the difficulty in maintaining a 100% gluten-free diet. I suspect that if you looked closely at the diets of those who did not recover within 2 years might be that their diets were not 100% gluten-free. Perhaps they ate out more often, or didn't understand all of the hidden ingredients where gluten can hide. Either way, it shows how difficult recovery from celiac disease can be for most people. According to this study: This article explores other causes of flattened villi:    
×
×
  • 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.