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Celiac With No Visable Symptoms?


Chris-M

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Chris-M Newbie

I'm a fairly healthy 28 year old male. i have had allergies for a long time. Lately it has been getting bad so i went to see an allergist. He did a skin test and it came up as i'm only allergic to a few things. all of which are not strong right now. He said my sinus's are very swollen and inflammed. He had me tested for a vitamin D defency and ciliac's. The vit D came back fine but the ciliac's he said came back confusing. he put me on a gluten and milk free diet. I have done some reading on the symptoms of this but i'm not sure if i really have any. I am about 2-3 inches shorter than every other male in my family. i have regular bm's, no indigestion, no heart burn. i do get very strong gas pains but that is only about once a month. i carry around a fair amount of extra weight and it is all around my mid-section. i know what fat feels like and this isn't fat. its fairly solid almost like muscle. The doc wants to refer me to a gastroenterologist to confirm the celiac.

The gluten/dairy free thing is hurting me. seems like everything i've ever liked to eat has wheat flour.

Has anyone else experienced symptoms similar to mine?


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JoshB Apprentice

Did you get a copy of your lab-work? That might be helpful.

40% or so of celiac cases involve no intestinal discomfort that the patient noticed. This is generally referred to as "silent celiac disease". Usually in these cases it's discovered because of the "minor" manifestations of the disease or because a family member was diagnosed. Symptoms and severity differ a whole lot from person to person.

Chris-M Newbie

Did you get a copy of your lab-work? That might be helpful.

no i just talked to the doc on the phone. i'll make sure to get a copy of my labs when i go in tomorrow for the CT of my sinuses

love2travel Mentor

My celiac was discovered after I requested bloodwork because another family member was diagnosed with gluten intolerance. I was so sure I did not have it and did not even give it a second thought because I was not sick. When the nurse called to tell me I have celiac I was absolutely stunned. NOT what I was expecting. I still did not believe it (at that time I did not know that 30% of bloodwork can be false negatives and that positives were almost always accurate) so I went back on gluten for three months. I loved it. I ate tons and tons of gluten, not knowing what internal damage I was causing (no one really told me much about that and I did not know what to ask). Biopsies showed that my villi were nearly completely flattened - very advanced, unfortunately.

So, it is indeed possible to not feel ill and have serious troubles inside. I truly hope that is not the case for you! Good news? My bloodwork has drastically improved so my villi are healing after being gluten-free six months.

Chris-M Newbie

How about this one. Since i have been on this gluten free/dairy free diet my stomach feels different after eating. my stomach feels heavy and thick. almost like i can feel my food sitting in my belly. I've never felt this before. could this be my stomach reacting to being gluten free?

ravenwoodglass Mentor

How about this one. Since i have been on this gluten free/dairy free diet my stomach feels different after eating. my stomach feels heavy and thick. almost like i can feel my food sitting in my belly. I've never felt this before. could this be my stomach reacting to being gluten free?

Your doctor should have never told you to go gluten free if you are being referred to a GI doctor for confirmation. Go back on gluten NOW. After you have your endo then give the diet a good strict try. Go with whole unprocessed foods to start. If you are not used to cooking then tell us and we can help you with some simple stuff to start with.

As to why your stomach feels 'heavy' it is hard to say without knowing what you are eating and how it is prepared. Also some of us don't realize how many things that are going on are celiac related until we have healed on the diet and they are gone.

Chris-M Newbie

Your doctor should have never told you to go gluten free if you are being referred to a GI doctor for confirmation. Go back on gluten NOW. After you have your endo then give the diet a good strict try. Go with whole unprocessed foods to start. If you are not used to cooking then tell us and we can help you with some simple stuff to start with.

The doc didn't say that he was refering me. he said that he might later.

My lab results.

Gliadin IGA Deamidated 4

Gliadin IGG Deamidated H 29 (Think the H is high)

Tissue Transglutaminase AB IgA(then it cuts off) 4

tissue transglutaminase AB IgO(cuts off again) 5

Any thoughts on my results???


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JoshB Apprentice

The manufacturer of the test kit seems to think that the specificity is above 98%. Usually "A" type antibodies seem to be higher, so that's a little odd. Did they do a "Total IgA" test as well?

Open Original Shared Link

I would think this is a positive result. If there's any question left in your mind, then now is the time to get a biopsy.

Chris-M Newbie

The manufacturer of the test kit seems to think that the specificity is above 98%. Usually "A" type antibodies seem to be higher, so that's a little odd. Did they do a "Total IgA" test as well?

The only other tests they ran was a vitamin D (VIT D 25 OH) which came back at 50.4 and a Total-Male Testosterone. which came back low at 261.8. normal range for my age is 270-1000

ravenwoodglass Mentor

The doc didn't say that he was refering me. he said that he might later.

My lab results.

Gliadin IGA Deamidated 4

Gliadin IGG Deamidated H 29 (Think the H is high)

Tissue Transglutaminase AB IgA(then it cuts off) 4

tissue transglutaminase AB IgO(cuts off again) 5

Any thoughts on my results???

If there is any chance that you are going to go to a GI doctor for confirmation you have to keep eating gluten. If your doctor is going to diagnose you based on your blood work being positive and you are not going to have a scope then go ahead and go gluten free. I agree with Josh that you should have a total IGA done to make sure you are not low. Although the company that makes the test states that it is 98% accurate personally I have my doubts about that as false negatives have been shown to be all too common. False positives however are extremely rare if not non-existant.

Chris-M Newbie

If there is any chance that you are going to go to a GI doctor for confirmation you have to keep eating gluten. If your doctor is going to diagnose you based on your blood work being positive and you are not going to have a scope then go ahead and go gluten free. I agree with Josh that you should have a total IGA done to make sure you are not low. Although the company that makes the test states that it is 98% accurate personally I have my doubts about that as false negatives have been shown to be all too common. False positives however are extremely rare if not non-existant.

after all the reading i've done i probably would of done a total IGA. Problem is i went to an allergist because my nose is always stuffed. did the skin tests and they were negative. even before the i went down to do the lab work the doc told me to go totally gluten and dairy free. i wasn't even sure what he was testing me for when i went down for labs. i thought it was a vitamin D deficiency. If i lived in a bigger city with more than 1 allergist i'd be asking for a 2nd opinion. still might once everything is said and done.

Its been 4 full days now of gluten and dairy free and my nose is still congested and i've been sneezing more than i used to. not sure if my body is adjusting or what but i'm still having a hard time sleeping because of my nose. hopefully the CT scan i had friday will show something and i can get off this diet.

ravenwoodglass Mentor

after all the reading i've done i probably would of done a total IGA. Problem is i went to an allergist because my nose is always stuffed. did the skin tests and they were negative. even before the i went down to do the lab work the doc told me to go totally gluten and dairy free. i wasn't even sure what he was testing me for when i went down for labs. i thought it was a vitamin D deficiency. If i lived in a bigger city with more than 1 allergist i'd be asking for a 2nd opinion. still might once everything is said and done.

Its been 4 full days now of gluten and dairy free and my nose is still congested and i've been sneezing more than i used to. not sure if my body is adjusting or what but i'm still having a hard time sleeping because of my nose. hopefully the CT scan i had friday will show something and i can get off this diet.

Chris the doctor you need to see about celiac or gluten intolerance is either a GP or GI. If gluten is contributing or causing your problems the 4 days is not enough time to really see a difference.

GFinDC Veteran

I had bad hayfever for years before going gluten-free. I took antihistamines every day just to be able to function. I took allergy shots for about a year and they seemed to help just a little. After I went gluten-free my hayfever allergies went away about 98%.

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    • trents
      So the tTG-IGA at 28 is positive for celiac disease. There are some other medical conditions that can cause elevated tTG-IGA but this is unlikely. There are some people for whom the dairy protein casein can cause this but by far the most likely cause is celiac disease. Especially when your small bowel lining is "scalloped". Your Serum IGA 01 (aka, "total IGA") at 245 mg/dl is within normal range, indicating you are not IGA deficient. But I also think it would be wise to take your doctor's advice about the sucraid diet and avoiding dairy . . . at least until you experience healing and your gut has had a chance to heal, which can take around two years. After that, you can experiment with adding dairy back in and monitor symptoms. By the way, if you want the protein afforded by dairy but need to avoid casein, you can do so with whey protein powder. Whey is the other major protein in dairy.
    • jenniber
      hi, i want to say thank you to you and @trents   . after 2 phone calls to my GI, her office called me back to tell me that a blood test was “unnecessary” and that we should “follow the gold standard” and since my biopsy did not indicate celiac, to follow the no dairy and sucraid diet. i luckily have expendable income and made an appt for the labcorp blood test that day. i just got my results back and it indicates celiac disease i think 😭   im honestly happy bc now i KNOW and i can go gluten free. and i am SO MAD at this doctor for dismissing me for a simple blood test that wouldn’t have cost her anything !!!!!!!!!!! im sorry, im so emotional right now, i have been sick my whole life and never knew why, i feel so much better already   my results from labcorp:   Celiac Ab tTG TIgA w/Rflx Test Current Result and Flag Previous Result and Date Units Reference Interval t-Transglutaminase (tTG) IgA 01 28 High U/mL 0-3 Negative 0 - 3 Weak Positive 4 - 10 Positive >10 Tissue Transglutaminase (tTG) has been identified as the endomysial antigen. Studies have demonstrated that endomysial IgA antibodies have over 99% specificity for gluten sensitive enteropathy. Immunoglobulin A, Qn, Serum 01 245 mg/dL 87-352
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      Thank you this really helped. 
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    • GlorietaKaro
      One doctor suggested it, but then seemed irritated when I asked follow-up questions. Oh well—
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