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New Here, Have Some Questions


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#1 Barki

 
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Posted 13 October 2010 - 06:05 PM

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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#2 psawyer

 
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Posted 13 October 2010 - 06:30 PM

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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Peter
Diagnosis by biopsy of practically non-existent villi; gluten-free since July 2000.
Type 1 (autoimmune) diabetes diagnosed in March 1986
Markham, Ontario (borders on Toronto)

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#3 cassP

 
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Posted 13 October 2010 - 07:10 PM

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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1986- Elevated Speckled ANA/no Lupus.negative Sjorgens
2008- AntiGliadin IGA/IGg~ Negative,TTG IGA/IGg~ Weak Positive, Endomysial Antibody~ Positive, IGA Deficient.
no biopsy (insurance denied)
6/2010- Enterolab Gene Test:
HLA-DQB1 Allele 1 0302
HLA-DQB1 Allele 2 0302
HLADQ 3,3 (subtype 8,8)
7/2010- 100% Gluten Free
8/2010- DH
10/2010-Hypothyroid dx-> 12/2010 Hashimoto's dx + 1/11- Graves dx :(

#4 Barki

 
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Posted 14 October 2010 - 01:08 PM

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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#5 cassP

 
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Posted 14 October 2010 - 09:10 PM

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:

http://www.greenmedi...ogenesis-type-1
  • 0
1986- Elevated Speckled ANA/no Lupus.negative Sjorgens
2008- AntiGliadin IGA/IGg~ Negative,TTG IGA/IGg~ Weak Positive, Endomysial Antibody~ Positive, IGA Deficient.
no biopsy (insurance denied)
6/2010- Enterolab Gene Test:
HLA-DQB1 Allele 1 0302
HLA-DQB1 Allele 2 0302
HLADQ 3,3 (subtype 8,8)
7/2010- 100% Gluten Free
8/2010- DH
10/2010-Hypothyroid dx-> 12/2010 Hashimoto's dx + 1/11- Graves dx :(




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