leadmeastray88

Enterolab has it's own way of gene testing.

There are 2 parts to the gene, the alpha part and the beta part. Enterolab only tests for the beta part. In cases like yours I wish they tested that too.

so the whole celiac genes are DQ2(really DQ2.5) and DQ8.

HOWEVER, two other genes if both present in a person can come together and make the celiac gene DQ2.

These two genes are DQ2.2( your gene HLA-DQB1 Molecular analysis, Allele 1 0202 is it) and some of the DQ7 genes(your DQ7 gene HLA-DQB1 Molecular analysis, Allele 2 0301 MAY be the other).

There is only one DQ2.2 gene so it is always half of the gene. There are several DQ7 variations. Only one of them is the other half of the celiac gene.

Based on the info given your DQ7 may be the variation that is the other half of the celiac gene. The only way to know for sure is with genetic testing for the alpha part of the gene. Kimball tests for alpha parts too, but then it is more money.

I only have the DQ2.2 gene(the half) without the other half. I never had bloodwork or a biopsy. However, my results on the diet indicated that I was having an autoimmune reaction to it. My malabsorption test was negative, but I had symptoms of that too. I feel soooooo much better without gluten. My Dr seems okay with assuming I have an autoimmune reaction caused by gluten intolerance since it has helped me so much.

good luck and take care

Wow, what helpful information! Thank you so much.

That has peaked my curiosity, I'm going to look into the Kimball genetic testing.

Does anyone happen to have a link to the Kimball site, or where I could get more info?

-Kim

Thanks for your input!

I have been on the gluten-free diet already for about a month (minus some mistakes).

Most of my symptoms have improved/disappeared, so I'm pretty confident in my decision.

I just wanted to see what others thought about these results.

I received my Enterolab results yesterday, here are the results:

A) Gluten Sensitivity Stool and Gene Panel Complete *Best test/best value

Fecal Antigliadin IgA 11 (Normal Range <10 Units)

Fecal Antitissue Transglutaminase IgA 7 Units (Normal Range <10 Units)

Quantitative Microscopic Fecal Fat Score <300 Units (Normal Range <300 Units)

Fecal anti-casein (cow's milk) IgA antibody 7 Units (Normal Range <10 Units)

HLA-DQB1 Molecular analysis, Allele 1 0202

HLA-DQB1 Molecular analysis, Allele 2 0301

Serologic equivalent: HLA-DQ 2,3 (Subtype 2,7)

Interpretation of Fecal Antigliadin 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 Antitissue Transglutaminase IgA: The level of intestinal IgA antibodies to the human enzyme tissue transglutaminase was below the upper limit of normal, and hence, there is no evidence of a gluten-induced autoimmune reaction.

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 antibody: 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: Although you do not possess the main HLA-DQB1 genes predisposing to celiac sprue (HLA-DQB1*0201 or HLA-DQB1*0302), HLA gene analysis reveals that you have two copies of a gene that predisposes to gluten sensitivity (any DQ1, DQ2 not by HLA-DQB1*0201, or DQ3 not by HLA-DQB1*0302). Having two copies of a 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 the gene. Two copies also means there is an even stronger predisposition to gluten sensitivity than having one gene and the resultant immunologic gluten sensitivity may be more severe.

Looks like my parents are a recipe for disaster!

Obviously I'm not having any malabsorption problems, no problem with casein, just elevated IgA with 2 copies of gluten sensitivity genes.

Any suggestions?

Speaking of Ibuprofen:

A couple of studies showed proper-dose ibuprofen to cause intestinal bleeding among average users.

I used to take ibuprofen regularly. Now that the celiac diet is working I buy the ibuprofen caplets, the kind your supposed to take two of, and I cut them in thirds. I take a third only when I absolutely have to ......maybe once every three or four weeks.

Just getting off the ibuprofen is great, to say nothing of the sinus headaches I was taking them for.

..

That's great info!

I hate taking ibuprofen. I try to do anything else possible to relieve a headache first, but if it doesn't work I will take it, and 2 of them, albeit. I'm glad I know that info now and I won't be so quick on it.

Thanks!

I have heard we should watch how my ibuprofen we take also because this will ruin our bacteria in our stomachs. And our stomachs arent real good to begin with

Yes I know, I only took this if I desperately needed it, and now I know it doesn't even work. I am also taking probiotics so this shouldn't be an issue. I don't and never go overboard with unnecessary medication.

Hi there,

I am also 19 and going through pretty much the same thing as you

If you can stand to eat the gluten, you should definitely go for the blood tests and endoscopy. And don't ask for it, demand it. Because your doc obviously doesn't know much about it. Ask for these blood tests:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Total Serum IgA

It's good to go in armed with info. I went and asked for the 'Celiac panel', and they only tested my tTG.

The reason, and the ONLY reason I opted for Enterolab, is because I didn't know what I knew then. I didn't know I needed all these tests. They told me it was negative, and I went on and did the gluten free diet as a trial. He refused to scope me with a negative blood test.

I just found out this week that they only testd my tTG which I KNOW is not conclusive on its own. Now I am not able to do the blood/biopsy because I have been gluten free for a month and won't go back.

Either way, its entirely up to you. IMHO go for the blood/biopsy first. It'll be so worth it and will give you peace of mind, unlike me, now I'll never know if I have Celiac or not, because remember Enterolab only tests for gluten sensitivity and NOT Celiac. If you need/want an official diagnosis, get the blood/biopsy.

I hope you feel better soon! Take care

Kim

I haven't been having any dramatic reactions to gluten, which is why I've ignored it for so long. What I do feel when I have a big plate of pasta is sluggishness, a feeling of fullness that's pressing down on me, and just plain awful and yukky. I don't get stomach symptoms though.

Does anybody else feel this way? Could this be celiac? I'm still waiting for my test results to come back.

Yes, it could definitely be gluten related. Many people have neurological symptoms as a reaction to gluten instead of gastro ones. For me, it's more gastro-related followed by an intense headache. Everyone is different.

Hope that helps

Kim

Headaches are my biggest symptom. At first it was nausea, but headaches have really gotten up there. That's how I know I've been glutened. Ibuprofen can't even touch it

Thank you so much for providing me with that information That helped so much.

Sorry to 'bump', but if anyone could help out I'd really appreciate it

Anyone?

I hear 'ya! I had the same thing happen to me today.

In June I had the "Celiac Panel" done, not knowing what that was or what tests they were, I didn't know then what I know now (Thanks to this place). When I went back all they said was 'its negative'

So I went today to fill a prescription, and while i was there I asked for a copy of my 'Celiac Panel' results to see what they tested.

Same as you, he only tested the ttG. He actually laughed at me when I asked for a copy.

I am very angry now, because now i don't know where I stand, and its too late because I"ve already started eating a gluten free diet and I can't go back now. If I had known they didn't test everything I would never have went gluten free before getting the testing.

People - learn from our mistakes! Go in armed with information and a LIST of the tests!:

Total IgA Serum

ttG - IgA

EMA - IgA

AGA - IgA

AGA - IgG

The doctors work for you - get what you want out of them or find someone who will listen.

I went to the doctors to get a copy of my celiac 'panel', if thats what you want to call it.

The only thing they tested was my ttG (t Transglutaminase antibody) and it was negative.

How accurate is it? Does this mean for sure that I don't have Celiac's?

Thank you!

-Kim

To quote a country song...."Yeah I've been there. That's why I'm here."

***hugs*** right back.

No worries girl, you'll feel better. Just give it time

I've been gluten-free for a month now and I'm jsut starting to feel better and notice changes. Time heals everything!

(hugs)

I have been suffering from symptoms for at least the past 14 years and probably longer. I knew I felt better on a "wheat free" diet, but didn't make the gluten connection until recently and by accident. Here's my problem:

Family history: Grandmother died of Rheumatoid Arthritis

Father has RA

Paternal Aunt has lupus

All three have an enlarged thyroid

Mother has "missing" enamel on front teeth (since a child) and has had chronic IBS since little. Probably lactose intolerant. Started suffering from migraines a few years back.

Maternal Aunt has suffered from excema (chronic) since infant and had thyroid removed due to benign tumors.

Sister has PCOS and thyroid disease

I was diagnosed with an enlarged thyroid at age 9, believed to have mononucliosis (tests were negative) at age 10-12 due to "chronic fatigue" (never heard of back then), fibromyalgia in 1995 (after birth of child and car accident). Had gallbladder removed in '96 due to gallstones and chronic GERD/Esophagitis. IBS began shortly thereafter and has been on and off since. Diagnosed as pregnancy induced thyroiditis after birth of twins (tests are always so close to normal but I have goiters that grow and shrink (back and forth) after childbirth). Lost weight during both pregnancies only to gain 30-40 pounds literally overnight 3-4 months after delivery. Dr's could not properly diagnose Hashimoto's (no insurance)but said it was likely - classic symptoms and history of autoimmune. Diagnosed as fructose intolerant by a gastro that NEVER once suggested I be tested for celiac. Even while scheduling me for an endoscopy.

I did not respond well to thyroid medicine - lowest dose sent me into hyperthyroid almost immediately. I have ALL symptoms of hypo but seem to keep it managed. I have recently been in an all out autoimmune response since coming back from an extensive vacation. Knuckles are painful and swollen (did I mention I have the beginning of distended joints and curved fingers?), carpal tunnel is back (usually a sign that my thyroid is wacked) and IBS like no one's business. I had been on a strict low carb diet before and during the trip and came back exhausted and have been eating out alot.

I am very certain there is a gluten issue there somewhere, even though many of symptoms overlap with thyroid issues. But with the family history it seems like a no brainer. My main question is (took a while to get there, huh?) can I afford the testing? I think at the very least my daughter is gluten intolerant (constant stomachaches, lactose intolerant as an infant, canker sores, very sensitive, pale stools, etc). I don't want to traumatize her with the diet if she's not, especially with a twin brother that doesn't have the same symptoms. I keep going back and forth on whether I need a diagnosis or not as well. But financially we can't swing paying cash and I can't afford to get a diagnosis that can prevent getting insured in the future. I feel like it's a no win situation.

Can anyone help give me an approx. idea of how much these tests cost? I've gone thru an endoscopy but do I really want my 7 year old to??? Everything I read says get tested first and get a diagnosis before going on the diet but it's just not that simple for me. This diet will affect the whole family and the budget. But I know our health is worth it. I guess I just want to make sure it's necessary.

Help???

If you're not concerned with having a specific Celiac diagnosis, you can try testing through Enterolab:

www.enterolab.com

They test for gluten sensitivity through antibodies found in a stool sample, and you can get the gene testing as well to see if you have the genes that predispose to Celiac/gluten intolerance. This would also be of use to you to see if it runs in your family or not, and you can figure out if maybe those problems your family were having were gluten related. I think this package was $369. (I don't know if thats cheaper than a scope or not for you) The best part is you don't have to be eating gluten to do the testing.

This testing does not test for Celiac but it will show up if you are sensitive to gluten. It doesn't really matter though because the treatment is the same : A gluten free diet.

If you really want to just know if gluten is the problem then this is a good alternative to you. I get my results in on Tuesday.

Hope this helps and good luck

Kim

I just spent some time in the ER due to a ruptured cyst. I was curious about two things. First, are celiac disease and ovarian cysts at all related to each other? Secondly, if I can't have gluten, is the birth control pill safe to have? Any answers would be much appreciated! You can email at im_a_christ_lover@yahoo.com.

Hi Laura,

I'm not sure if ovarian cysts and celiac are related, but you can have BC pills as long as they are gluten free. I am on Portia, and as far as I know, Yaz is also gluten free.

Hope thats helps!

-Kim

For me, its hard to tell whats going on when I'm menstruating because I always have this dull ache in my lower abdomen that sort of feels like menstrual cramps but much less painful and subdued. Then when I get my period, they come on full force, so I can't tell if its just menstrual cramps or if its because of my period that my symptoms are worse. I don't know. Sometimes I can alleviate it with Advil and sometimes I can't.

I can say that for the couple days leading up to my period, I am much more nauseous than usual. Don't know if thats normal thats just the way it's always been for me. And I am also on the BCP by the way.

Don't know if I helped much or not, but thats just my experience.

Very interesting! As you can see by my signature I have had 9 hernia repairs - and look where we meet. That has to say something.

Do you think one causes the other or vice versa??

This sure gives me some hope that I have finally found the answer to my problems.

-Kim

When I have the money for it, I will be ordering that series. Do you have to be on a gluten-filled diet to test with Enterolab, or can you stay gluten-free?

Thats the best part - you can be gluten free when you do the test. I was gluten free for a week when I did mine. They say that its still reliable for up to a couple years after you cut it out.

The doctor just called (and I hate how fast he talks--like he can't discuss anything). He just said, "Sprue was negative, everything else looks good." No anemia, no EMA results. I had to call back to ask them to hve a copy of the blood test results at the front for me or my husband to pick up. They won't even mail them. Grr.

I *feel* better without eating bread and pasta. I am waking up without feeling hungover and actually am waking up before my alarm, which never used to happen. I used to sleep in till nearly 9, if I was allowed, and all my life had a hard time waking up. Never felt rested. Now I feel rested. I'm regular for the first time in weeks.

When I read through associated problems with celiac, I have some of them. My family has some of them.

But without a blood test to verify this, I feel like a kook. I feel like I'm just going to be putting myself and my family through unneccessary bother unless I can say truthfully, I'm a celiac. Without a diagnosis I'm just a health nut.

Hi there,

I definitely can relate. I had the same thing happen to me. I had the bloodwork done and it all came back negative, yet I feel so much better off gluten.

Something you have to keep in mind though is that diagnosis by bloodwork is not always reliable. My cousin who is now 14 was diagnosed with Celiac by biopsy when she was 9, and she had negative bloodwork. So any negative test is never really definitive.

If staying off gluten makes you feel better, you have your answer. You don't need to prove to anyone else that there's a valid medical reason for it, because you may never get one no matter how many tests you run.

Just know you're not alone

-Kim

I went to a chiropractor today for a consultation and mentioned the celiac test. He did some kind of wierd allergy test where I held a vial of gluten in one handand I had a little bit of muscle weakness, in one of my other, which stated that I had a gluten allergy. If that was the gold standard, I think we'd all be in a bit of trouble.

This is very interesting - my aunt, who is a natural healer (I don't think she is a 'qualified' naturopath) did this same test on me.

She made me hold a loaf of bread in my heands with my feet shoulder width apart, and watched how I reacted. Apparently if you are allergic your muscles weaken and cause you to lean slightly backward from the food in question. The opposite happened for a gluten free loaf of bread.

Obviously not a 'gold standard' for testing, but very interesting

Happy Birthday!!

Hope it's a great one!

Hi guys,

Most people here recommend elimiinating dairy and soy from your diet once you start gluten free until your stomach heals. What happens if you don't? Do you keep having the same symptoms as before?

The reason I'm asking is because I've been on the gluten-free diet for about 3 weeks now and although I've been *avoiding* dairy and soy, I haven't been eliminating it completely. On occasion I'll have a crampy stomach and was curious if it was related to that or not.

Thanks!

Kim

That's great - thank you all for your responses!

That definitely cleared a lot things up for me - I wasn't sure if gluten could be absorbed through skin contact and now I know Thanks!

Nobody has any input??