Still sensitive after all these years...is it Celiac?

[kwylee]

Been a long while since I have posted.  Will try to make this as quick as I can.  History:  I had persistent brain fog 7 years ago and medical doctors and even a neurologist at the time couldn't explain it (no mention of gluten sensitivity to me, much less Celiac), so on my own I had stool sample test that was to gauge if I had gluten sensitivity as I read about in an email one day.  This stool sample also tested for related genetics.  Well, the test showed I had a highly elevated antibodies to gluten, but somehow also showed that my nutrients were absorbing correctly.  At least, this is how I interpreted the test and I thought that meant I did not have Celiac.  But I immediately put myself on a strict gluten/dairy/soy free diet (thanks to forums such as this one) and after a period of withdrawal where I felt awful, I began to improve and felt much better in every way.  As long as I did not ingest any of the culprits.  I was not having stomach issues prior to the diet but as time went by I found I became more and more sensitive to cross-contamination.

Today, 7 years later, I still cannot eat out in restaurants in fact I can't eat any food that I do not cook myself and I even start to mildly react after a few days eating any product that is manufactured in a facility that also processes gluten or soy.  

I don't know if it's even possible to be tested for Celiac at this point having been away from it for so long, nor if that would change anything except make to me an insurance risk.  My wish in these past 7 years has never been to go back to eating gluten, dairy or soy.  I lost a ton of weight and my blood pressure and glucose is perfect.  But I have held on to HOPE that one day I could tolerate at least minimal cross-contamination. 

Is it possible to test for Celiac today and not do a challenge first, and is it helpful that I have the Genetic testing done (if that's what I actually had)?  I honestly do not think I could survive a challenge, because all my exposure over the years is cross-contamination only.  I have no idea what would happen to me if I actually ingested a piece of wheat bread or pasta. 

Do doctors know more now about testing and diagnosis now than they did 7 years ago? 

Is it possible to be extremely sensitive after 7 years and still not necessarily have Celiac?

Are there people with Celiac that can come to tolerate cross-contamination? 

I've included my test results below (I left off the lab name as it used to be prohibited in forum posts).  Did this rule out Celiac, or is it inconclusive for that? 

I would appreciate any feedback you can give.  I'm confused.  Not sure what to do at this point, except to keep going the way I have of course.  THANKS!!!

 

Date: 6/7/2010

A) Gluten Sensitivity Stool and Gene Panel Complete *Best test/best value
Fecal Anti-gliadin IgA    318 Units   (Normal Range is less than 10 Units)
Fecal Anti-tissue Transglutaminase IgA    106 Units   (Normal Range is less than 10 Units)
Quantitative Microscopic Fecal Fat Score    Less than 300 Units   (Normal Range is less than 300 Units)
Fecal Anti-casein (cow’s milk) IgA    29 Units   (Normal Range is less than 10 Units)
HLA-DQB1 Molecular analysis, Allele 1    0302   
HLA-DQB1 Molecular analysis, Allele 2    0301   
Serologic equivalent: HLA-DQ   3,3  (Subtype 8,7)

Interpretation of Fecal Anti-gliadin IgA:  Intestinal antigliadin IgA antibody was elevated, indicating that you have active dietary gluten sensitivity. For optimal health, resolution of symptoms (if you have them), and prevention of small intestinal damage and malnutrition, osteoporosis, and damage to other tissues (like nerves, brain, joints, muscles, thyroid, pancreas, other glands, skin, liver, spleen, among others), it is recommended that you follow a strict and permanent gluten free diet. As gluten sensitivity is a genetic syndrome, you may want to have your relatives screened as well.

Interpretation of Fecal Anti-tissue Transglutaminase IgA:  You have an autoimmune reaction to the human enzyme tissue transglutaminase, secondary to dietary gluten sensitivity.

Interpretation of Quantitative Microscopic Fecal Fat Score:  Provided that dietary fat is being ingested, a fecal fat score less than 300 indicates there is no malabsorbed dietary fat in stool indicating that digestion and absorption of nutrients is currently normal.

Interpretation of Fecal Anti-casein (cow’s milk) IgA:  Levels of fecal IgA antibody to a food antigen greater than or equal to 10 are indicative of an immune reaction, and hence immunologic “sensitivity” to that food. For any elevated fecal antibody level, it is recommended to remove that food from your diet. Values less than 10 indicate there currently is minimal or no reaction to that food and hence, no direct evidence of food sensitivity to that specific food. However, because 1 in 500 people cannot make IgA at all, and rarely, some people can still have clinically significant reactions to a food antigen despite the lack of a significant antibody reaction (because the reactions primarily involve T cells), if you have an immune syndrome or symptoms associated with food sensitivity, it is recommended that you try a strict removal of suspect foods from your diet for up to 12 months despite a negative test.

Interpretation Of HLA-DQ Testing:  HLA-DQB1 gene analysis reveals that you have one of the main genes that predisposes to gluten sensitivity and celiac sprue, HLA-DQB1*0201 or HLA-DQB1*0302. Each of your offspring has a 50% chance of receiving this gene from you, and at least one of your parents passed it to you. You also have a non-celiac gene predisposing to gluten sensitivity (any DQ1, DQ2 not by HLA-DQB1*0201, or DQ3 not by HLA-DQB1*0302). Having one celiac gene and one gluten sensitive gene, means that each of your parents, and all of your children (if you have them) will possess at least one copy of a gluten sensitive gene. Having two copies also means there is an even stronger predisposition to gluten sensitivity than having one gene and the resultant immunologic gluten sensitivity or celiac disease may be more severe

 

[Jmg]

Hello and welcome back

I'm not sure where you had your test but my understanding is that the main Celiac centres don't recognise the fecal test. eg

Open Original Shared Link

As for the genetic testing, it can't be used to diagnose celiac but it can help to exclude it. 

 

The standard testing procedure is a blood test, ideally including:

Anti-Gliadin (AGA) IgA
Anti-Gliadin (AGA) IgG
Anti-Endomysial (EMA) IgA
Anti-Tissue Transglutaminase (tTG) IgA
Deamidated Gliadin Peptide (DGP) IgA and IgG
Total Serum IgA

but in practice a lot of clinics seem to stick to the TTG as the most accurate. Some people don't show up on this one which is why having the other tests ran is preferable. 

If you want to pursue a diagnosis you'd have to eat gluten every day for between 8-12 weeks. I know that sounds horrible! There's some more info about testing and some useful links here and there's an faq stickied on the forum you should also check out. 

1 hour ago, kwylee said:

But I have held on to HOPE that one day I could tolerate at least minimal cross-contamination. 

There are some new products which may be of help. You take them before eating and they may help to reduce the chances of getting ill from cross contamination. I can't remember the brand name but I'm sure someone here can help. I haven't used them myself however so can't speak to their effectiveness.

Hope this of help!

 

[kwylee]

Yes, good to be back.  I should never have gotten out of the habit of checking in everyday.

Very helpful, thanks so much!

[Jmg]

48 minutes ago, kwylee said:

Yes, good to be back.  I should never have gotten out of the habit of checking in everyday.

Very helpful, thanks so much!

You're welcome  I'm glad it was of some help.

I had a look and found the product I was thinking of, it's called GliadinX and it's discussed here

There's also an account from another forum member of a similar sounding product here:

As above I haven't used either product so I can't speak for their effectiveness, but next time I travel I am thinking I will take one of these with me as an additional insurance against cross contamination. 

Best!