Positive Results - No Symptoms

[betts13]

Enterolab was recommended to me by a friend who saw some issues in me that might be celiac related. Migraines were my biggest issue. I did not have chronic stomach issues. i decided to be tested to rule out celiac as a cause of the headaches. Expected negative results and instead got the following:

Fecal Antigliadin IgA 51

Fecal Antitissue Transglutaminase IgA 33 Units

Quantitative Microscopic Fecal Fat Score <300 Units

Fecal anti-casein (cow

[Korwyn]

I have not met anyone who was diagnosed the way I was, seemingly by accident with no apparent symptoms. I would love to have some feedback about whether I'm doing the right thing by putting all my faith in the enterolab tests and being as careful as I am.

I would suggest that (especially since you have no other symptoms) that - with your physicians cooperation - undertake a gluten challenge and have at biopsy done. Research in your area (maybe the boards can help?) and find a GI who is familiar with doing endoscopy for Celiac disease. Have a biopsy would also help with your family thinking you are taking it too seriously. Also just because you have no overt symptoms does not mean there are not other things going on. There are over 300 associated symptoms, conditions, and related disorders linked to untreated celiac disease. Increase melanoma risk, early onset Alzheimer's, some possible links now to Parkinson's, MS, Fibromyalgia, Rheumatoid Arthritis, Hashimoto's and other Thyroid disorders, etc, etc.

[betts13]

I would suggest that (especially since you have no other symptoms) that - with your physicians cooperation - undertake a gluten challenge and have at biopsy done. Research in your area (maybe the boards can help?) and find a GI who is familiar with doing endoscopy for Celiac disease. Have a biopsy would also help with your family thinking you are taking it too seriously. Also just because you have no overt symptoms does not mean there are not other things going on. There are over 300 associated symptoms, conditions, and related disorders linked to untreated celiac disease. Increase melanoma risk, early onset Alzheimer's, some possible links now to Parkinson's, MS, Fibromyalgia, Rheumatoid Arthritis, Hashimoto's and other Thyroid disorders, etc, etc.

I don't know why I would consider a biopsy when I never had GI issues when I was eating gluten. There wouldn't be damage without diarreah or some type of GI problems from what I understand. Maybe I have that wrong? Does anybody else have a similar story to mine or know anyone who does? Do my results scream "stay away from gluten" to everyone?

[GFinDC]

Regarding lack of symptoms, maybe reading this thread will help. The OP (original poster) said he had a little gassiness and anemia before diagnosis.

New And Questioning Things Probably not that original a concept

There is silent celiac, where people have damage but no apparent GI symptoms. There have been other people who posted about being diagnosed when they had no symptoms also. There is also something called latent celiac, although I forget how that differs. There are articles about it on the main site here if you search for them. Also, people with DH often have weaker GI symptoms and not as much damage to the intestine, from what I have read. But they still have the autoimmune reaction in their skin. Gluten can affect much more than your intestine. You will hear that referred to as gluten intolerance, vs celiac. That's where people don't have obvious villi damage on a biopsy or blood results, but still have symptoms.

It seems sometimes GI symptoms get stronger after being off gluten a while. Your blood tests were not likely to show a positive after 10 weeks gluten-free.

[ravenwoodglass]

Gee I wonder if we are related. You are only one of two other DQ9s I have seen here. For me the migraines were a definate issue before diagnosis and I haven't had another since I went gluten free. It did take many years of neuro and skin issues before I developed GI issues, like almost 20 before they seemed anything other than an occasional inconvience. Meanwhile my brain, joints and skin were under serious attack. I do have to be extremely strict to prevent any migraines and other symptoms from coming back.

You could try a gluten challenge but you will need to be on it for about 3 months. Even then you may not show up in blood work or biopsy. I am sorry you haven't been able to get your other family members to test but you really need to take care of you. If you do the challenge to try and get a 'doctor defined' diagnosis please do go back to the diet afterward no matter what the test results. You really don't want to develop a signature like mine.

[AKcollegestudent]

My only symptoms for quite a while were migraines and later--primarily after I went gluten-free this last time--joint pain. Other things sometimes show up, but very rarely. I've never had the genetic testing, though I've had a positive diagnosis for years. One day, if I actually have money, I hope to do the genetic testing.

But because my migraines are so very fun for both me and anyone around, my family basically goes, "Okay, if we have to be vigilant, then you get to cook." And you know, that wasn't different from prior to actually going gluten-free.

But every once in a while, someone actually says, "Wait, you're that sensitive?"

Yes, yes, I am. I don't like my body attacking itself; please don't provoke it.

[betts13]

Regarding lack of symptoms, maybe reading this thread will help. The OP (original poster) said he had a little gassiness and anemia before diagnosis.

New And Questioning Things Probably not that original a concept

There is silent celiac, where people have damage but no apparent GI symptoms. There have been other people who posted about being diagnosed when they had no symptoms also. There is also something called latent celiac, although I forget how that differs. There are articles about it on the main site here if you search for them. Also, people with DH often have weaker GI symptoms and not as much damage to the intestine, from what I have read. But they still have the autoimmune reaction in their skin. Gluten can affect much more than your intestine. You will hear that referred to as gluten intolerance, vs celiac. That's where people don't have obvious villi damage on a biopsy or blood results, but still have symptoms.

It seems sometimes GI symptoms get stronger after being off gluten a while. Your blood tests were not likely to show a positive after 10 weeks gluten-free.

Replying to everyone who answered!!! - thanks so much for your responses!! It helps to hear what everyone thinks and read about people who are similar to me too. The thread from "new and questioning" was very interesting too. I have discovered something here that I did not know before - that reflux is related. I was diagnosed with reflux a year before the celiac diagnosis but doc thought it was caused by Fiorinal I was taking for migraine pain. I have only been to one GI doc, Cynthia Rudert, expert in celiac and gluten intolerance. And she did not mention reflux...but maybe I didn't mention I had the issue. Yes, I had periods of exhaustion too but I thought they were related to stress. That is one of the symptoms my friend recognized in me. I had crashes that were emotionally and immune related in her eyes. My family is not gluten free, as I've said. But they try to be careful for me. But now I'm not so sure after reading the posts if we clean the counter well enough after one of them makes toast or a sandwich and there are crumbs around. I've wondered if making school lunch for my daughter (handling the bread) could have delayed my recovery. I was tested at about the 2 year point and my numbers did not get much lower than the originals. So I changed all of my hair, lotion and skin products (except one hair treatment). And I try not to make sandwiches for the family anymore. They are old enough to make their own!

I think that from what I have heard from you so far is that I should except at least a gluten intolerance diagnosis without question and that I should continue to pursue a strict gluten free lifestyle. This will actually help my family accept my level of care too I think. Truly, if the migraines had stopped I would feel blessed for discovering the origin. I guess I need to find the blessing another way.

I welcome any other related info and advice! Keep it coming! And thanks again!

[tarnalberry]

That's exactly what silent celiac is - damage occurs to the intestine (and potentially other parts of the body) without any symptoms. If left untreated, it causes all the same problems that a symptomatic untreated celiac has - increased risk of nutritional deficiencies (aenemia, osteoporosis, etc.), increased risk of intestinal cancer and lymphoma, increased risk of other autoimmune diseases (hashimotos, rheumatoid arthritis, etc.), and an average decrease in life span of 10 years.

[nora-n]

Here in europe there are lots and lots of biopsy diagnosed celiacs without symptoms, just anemia and low vitamin D or B-12 in hindsight.

Here they test all the other close relatives when one celiac is diagnosed.

Often, very often there is another celiac in the family, and often they are without symptoms despite of very positive biopsies.

About your gene test:

Those are not used to diagnose alone, as there are 9 DQ types everyone has two different of those,or two of the same.

[CDx3]

I soooo understand what you are going through... I personally do not have celiac disease but had both my children tested after my husband was positively diagnoised. Neither of them had any GI issues other than the occasional belly ache from my youngest. They were both positive. It's difficult to try to explain to our extended family and to them how strict the diet needs to be when there are no 'seen' symptoms. Stay strong!