Have I Been Diagnosed With Celiac Disorder, I I Haven't Had Blood Test

[LouClements49]

Hi,

I recently took the full panel test for Entrolabs.com in May 2010. My results came back positive, with DNA showing that I had the gene for presupposition for Celiac Disease.

Here are the results of full Panel Test:

Gluten Sensitivity Stool and Gene Panel Complete

*Best test/best value Fecal Anti-gliadin IgA 46 Units (Normal Range is less than 10 Units)

Fecal Anti-tissue Transglutaminase IgA 22 Units (Normal Range is less than 10 Units)

Quantitative Microscopic Fecal Fat Score 1205 Units (Normal Range is less than 300 Units)

Fecal Anti-casein (cow

[Skylark]

Hi, and welcome to the board.

Yes, you could have celiac. The things that are more suggestive are low vitamin D and magnesium, which is absolutely suggestive of malabsorption, auto-immune thyroid disease, and the itchy blisters, which could be dermatitis herpetiformis. I don't know about the natural killer cells. Maybe someone else has run across it.

Enterolab results are not diagnostic, and it would be malpractice for your doctor to diagnose from them. You do have a gene that increases risk for celiac disease, DQ8 (the 0302 allele). Many people on this board who got Enterolab results like yours definitely feel better off gluten.

If your doctor will order a biopsy, that would be idea.. You should also have a celiac blood panel done if you haven't already. It needs to be done quickly, as going off gluten will start to heal the damage and antibodies will disappear if you're celiac. The big advantages is you'll get an idea of the health of your villi, and if there are celiac markers in your blood your doctor can monitor how well the diet is working. The blistery rash can also be biopsied by a dermatologist. They test near a blister for autoimmune antibodies.

Whether or not you get more tests done, it is definitely a good idea to try the gluten free diet and see if your health improves.

[mushroom]

I agree with Skylark, celiac testing and biopsy is definitely in order. What is the problem with your doctor? Does he not want to do this? What has he diagnosed you as having - IBS??? What does it take to get a doctor to test for celiac anyway? With your symptoms and test results from Enterolab, regardless of what the medical profession says, I would quit eating gluten and see what happens (but not until you have exhausted your testing possibilities). Your Enterolab numbers are very indicative of a gluten problem, whether fullblown celiac or "borderline" or whatever words they want to ascribe to it. My bet is that you will feel a million times better without gluten, but you seem to be a person who wants the official label, and if that is so, I would push your doctor for the appropriate M.D. medical testing. This could, of course, come up negative as there are many false negatives with these tests, and if the endo doesn't biopsy the right areas that could also come up negative. It is so frustrating isn't it, to have to push for the testing that has a good chance of not properly diagnosing you. Neverthless, this is an imperfect world, and if you want your doctor's acceptance of the diagnosis he should order the tests, for your and his sake. It sounds like he is just resigned rather than proactive and doing something for you - the fact that you had to go to Enterolab is indicative (or have I missed something and you had the other tests and they were negative??) It was not entirely clear from your post.

In answer to your question, yes the symptoms you have had could all be caused by celiac disease, including the low D and magnesium. Your doctor seems to know very little about celiac disease - maybe has never diagnosed it because he does not know what to look for

[ravenwoodglass]

I agree with the other posters. Yes you do sound like 'one of the family'. You really should get blood and biopsy done before you go gluten free. It was rather irresponsible of your doctor IMHO to tell you to go gluten free before that testing was done. If you go gluten free before testing it will pretty much insure a false negative on the tests. That said if the gluten free diet helps you it is not something your doctor has to 'prescribe'.

[Mari]

*Best test/best value Fecal Anti-gliadin IgA 46 Units (Normal Range is less than 10 Units)

Fecal Anti-tissue Transglutaminase IgA 22 Units (Normal Range is less than 10 Units)

Quantitative Microscopic Fecal Fat Score 1205 Units (Normal Range is less than 300 Units)

Fecal Anti-casein (cows milk) IgA 10 Units (Normal Range is less than

10 Units)

HLA-DQB1 Molecular analysis, Allele 1 0302

HLA-DQB1 Molecular analysis, Allele 2 0402

These results would convince me that I had Celiac Sprue. The anti-tissue transglutaminase shows you are havng destruction of the villi, the fecal fat is way off the scale and the anti-glaidin is elevated also. Besides you have a main celiac marker (I'm assuming it is DQ2) (302) and another DQ2 marker (402) which I'd have to look up to see if it involved in celiac disease.

My enterolab results were similar - DQ2 302 and 602 and I found that I had about a 77% chance of developing celiac disease and having the 602 made the disease worse. I felt better on a gluten free diet and when I am glutened I get intestinal, skin and other problems. My blood tests showed anti-gliadin antibody elevated but tissue transglutaminse not elevated . I decided not to have the biopsy, I was already convinced I have celiac disease.

[Skylark]

DQB1*0402 one of the few alleles not associated with celiac disease. Where did you get that 77% number, Mari? The big Prometheus study puts the chance of celiac in DQ8 heterozygotes at more like 2% risk. Open Original Shared Link I haven't seen any work that would put the risk that high.

Fecal anti-tTG is a marker for inflammation. Enterolab doesn't mention this, but it shows up in other diseases besides celiac so you cannot assume villous damage without a biopsy.

[LouClements49]

Hi, and welcome to the board.

Yes, you could have celiac. The things that are more suggestive are low vitamin D and magnesium, which is absolutely suggestive of malabsorption, auto-immune thyroid disease, and the itchy blisters, which could be dermatitis herpetiformis. I don't know about the natural killer cells. Maybe someone else has run across it.

Enterolab results are not diagnostic, and it would be malpractice for your doctor to diagnose from them. You do have a gene that increases risk for celiac disease, DQ8 (the 0302 allele). Many people on this board who got Enterolab results like yours definitely feel better off gluten.

If your doctor will order a biopsy, that would be idea.. You should also have a celiac blood panel done if you haven't already. It needs to be done quickly, as going off gluten will start to heal the damage and antibodies will disappear if you're celiac. The big advantages is you'll get an idea of the health of your villi, and if there are celiac markers in your blood your doctor can monitor how well the diet is working. The blistery rash can also be biopsied by a dermatologist. They test near a blister for autoimmune antibodies.

Whether or not you get more tests done, it is definitely a good idea to try the gluten free diet and see if your health improves.

Open Original Shared Link

Deficiency of invariant natural killer T cells in coeliac disease

R H Grose, A G Cummins, and F M Thompson

R H Grose, A G Cummins, F M Thompson, Department of Gastroenterology and Hepatology, The Queen Elizabeth Hospital, Woodville South, South Australia, Australia

Correspondence to: Dr A G Cummins

Department of Gastroenterology and Hepatology, (DX 465384), 28 Woodville Road, Woodville South, 5011, South Australia, Australia; adrian.cummins@nwahs.sa.gov.au

Revised September 6, 2006; Accepted October 14, 2006.

My Doctor had my Natural Killer Cells checked and they were way too low. As I mentioned above to be healthy it's good to have around a 100. My Doctor said anyting below 20 is not good. My Natural Killer Cells were below 5. These Killer Cells are important for killing off viruses and they keep cancer cells from from metastasizing in the body.

This Doctor is attacking my situation through the Label Chronic Fatigue Syndrome, brought on by a weakened Immune System. The Immune System has been weakened from Hasimoto's Thyroid, Moderate Adrenal Fatigue and Maybe Celiac along with older viruses that keep popping up, because of the weakened immune systems. He has not said one way the other if he thought I had Celiac. Both he and my husband talked me out of getting the other blood test and biopsy and they both encouraged me to stop eating Gluten's, along with Corn, Milk and Soy. Because the important thing is to stop the Autoimmune Reponse that is taking place in my Body, which keeps making me sicker and sicker and more weak.

Thank you for your reponse. . .I hope you find the "Deficiency of invariant natural killer T cells in coeliac disease" interesting. I know I thought is quite interesting because of my situation

Sincerely,

louclements49

[LouClements49]

I agree with Skylark, celiac testing and biopsy is definitely in order. What is the problem with your doctor? Does he not want to do this? What has he diagnosed you as having - IBS??? What does it take to get a doctor to test for celiac anyway? With your symptoms and test results from Enterolab, regardless of what the medical profession says, I would quit eating gluten and see what happens (but not until you have exhausted your testing possibilities). Your Enterolab numbers are very indicative of a gluten problem, whether fullblown celiac or "borderline" or whatever words they want to ascribe to it. My bet is that you will feel a million times better without gluten, but you seem to be a person who wants the official label, and if that is so, I would push your doctor for the appropriate M.D. medical testing. This could, of course, come up negative as there are many false negatives with these tests, and if the endo doesn't biopsy the right areas that could also come up negative. It is so frustrating isn't it, to have to push for the testing that has a good chance of not properly diagnosing you. Neverthless, this is an imperfect world, and if you want your doctor's acceptance of the diagnosis he should order the tests, for your and his sake. It sounds like he is just resigned rather than proactive and doing something for you - the fact that you had to go to Enterolab is indicative (or have I missed something and you had the other tests and they were negative??) It was not entirely clear from your post.

In answer to your question, yes the symptoms you have had could all be caused by celiac disease, including the low D and magnesium. Your doctor seems to know very little about celiac disease - maybe has never diagnosed it because he does not know what to look for

My Doctor is a Chronic Fatigue Syndrome Specialist he is attacking my particular situation for a whole body perspective. So, he is looking at everything. Because I have been so sick, he didn't want me to waite for any other test. It was important for me to start on a Gluten Free, Soy Free, Corrn Free, Dairy Free diet to get my body to stop attacking itself, So he is not just looking at the Celiac as the main cause, he is looking at everyting to make sure we got the right root cause to stop the Huge Autoiimmune Response I am have been having in my Body.

Thank you so much for your concern and help. Lord knows I need it.

louclements49

[LouClements49]

I agree with the other posters. Yes you do sound like 'one of the family'. You really should get blood and biopsy done before you go gluten free. It was rather irresponsible of your doctor IMHO to tell you to go gluten free before that testing was done. If you go gluten free before testing it will pretty much insure a false negative on the tests. That said if the gluten free diet helps you it is not something your doctor has to 'prescribe'.

I wish I had Gotten the all those test, but at the time I was feeling so horrible that I was willing to do what ever was asked of me. So, Going Gluten Free was not a problem. Although it's been quite a challenge, since I also eat Low Carb and I have other food sensitivities to corn, Dairy/Casein and Soy. I am also very careful about MSG. I wish I could tell you that things a getting a better, but I am still have problems with indegestion and diarrhea just not as offten. So, as I've been told by my Doctor it's going to take a while for me to heal. It would have been nice to know how much damage has been done to my intestional area, but again doesn't it take really good doctor to even get a good biopsy? I have had some good things happen since going Gluten Free. The Hives on my fingers and toes etc. have gone away and have not come back. So, Slowly I am healling. And the Doctor that I am with is looking at all the things that are going on in my body to make sure we have the right root cause. We need to turn off the Auto Immune response to my body. . .

Thank you so much for your help and concern. All those test are still an option. I just do know, If I want to do a Gluten Challenge it kind of scares me considering they weakened state my body is alreay in.

Sincerley,

louclements49

[LouClements49]

*Best test/best value Fecal Anti-gliadin IgA 46 Units (Normal Range is less than 10 Units)

Fecal Anti-tissue Transglutaminase IgA 22 Units (Normal Range is less than 10 Units)

Quantitative Microscopic Fecal Fat Score 1205 Units (Normal Range is less than 300 Units)

Fecal Anti-casein (cow