This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc. Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store. For Additional Information: Subscribe to: Journal of Gluten Sensitivity
I read somewhere that IgA antibodies dissipate in about 2 weeks after you eliminate the offender (in this case gluten). Since your test was 4 months after eliminating it, I would think that a normal level would be expected as long as you followed the diet accurately. On the other hand, it said that IgG antibodies take about 6 months to dissipate. I also tested my daugter for these antibodies and confirmed that this indeed is the case with the lab that did the test (because it was 3 months after elminating gluten when we decided to run these tests). By the way, her IgG antibodies were also high to gluten, gliadin, rye, spelt, etc.
It's true that according to the medical community, the genetics only predispose a person to Celiac Disease. So how can genetic testing be useful? Genetic testing can rule celiac disease out, but not in. It is also helpful to know if a biopsy is necessary. One of my daughter's has 2 "gluten sensitive" genes (as defined by Enterolab) and therefore a biopsy should not reveal celiac disease and would be pointless. By definition, three things are necessary for celiac disease to manifest...1. The person needs to have the genetics that predispose them. 2. The person needs to be eating gluten. and 3. Some 3rd unknown factor triggers the disease (believed by many to be a virus).
Another benefit to genetic testing is to see how far reaching the possibility of celiac disease or GS is across your family. I am one of 6 children and through a little genetic testing we could see that it is impossible for any one of my siblings not to have at least one of these genes. It also showed me that gluten problems could appear on both my maternal side and paternal side. Therefore, I sent out a letter explaining this to all my relatives at Christmas (2005). Now a cousin and her son are also gluten free (paternal side). Then I got back a letter from a relative on my mother's side (my mother was adopted, and we are not close to the blood relatives) which revealed celiac disease had recently been diagnosed on that side. That makes me believe that my Celiac gene came from my mother (but it doesn't prove it).
So, for what it's worth, these are my thoughts on the usefulness of genetic testing.
In your case, based on your diagnosis and your father's symptoms alone, an educated guess would suggest that he did have it. Genetic testing would only strengthen the argument, but not prove it.
Hope this was helpful!
Thank you for your kind thoughts. My heart goes out to your sister and her daughter. From all that I have read, I learned that there is a high rate of false negatives in young children. Perhaps she should have her retested now? I belong to an informal group of local gluten free people and one girl's daughter tested negative on 2 occasions before she finally tested positive...I believe her daughter was 2 when the test was positive. The doctor (who is right here in Boston) was persistent in retesting her because she had some classic features of Celiac Disease...one of which he said was long eye lashes (I found that quite interesting!). The last time she was tested I think he submitted blood work either 2 or 3 times a month apart and it went from negative to highly positive in that short of a time span...that just shows that the testing is not as reliable as they claim.
With that being said, my daughter actually tested negative for IgA TTG and IgA EMA. It was Enterolab testing (a positive IgA for anti-gliadin and 2 celiac genes) that helped me figure it out. Even before receiving the test kit, I put my daughter on the gluten-free diet and it only took 6 days to see a huge improvement. When we received the results, we found out that she also was dairy intolerant. Eliminating dairy as well made an even bigger improvement. By the time we got to see the specialist in Boston, over 3 weeks had passed. At the suggestion of eating gluten again for 4-6 weeks so that she could be biopsied, she cried. There was NO WAY she could eat gluten again. The bottom line is that she is healthy and happy again...I will take that over a confirmed diagnosis any day! I sure hope your sister will look into the gluten free diet again.
In my opinion, although we did not have the biopsy done on my daughter, there are some advantages.
1. It is my understanding that in the U.S. you can write off the increased expense of gluten-free food on your taxes as if it were medicine (but only with a medical diagnosis).
2. A definite diagnosis is less likely to be challenged by either you or your child in later years. Following a gluten-free diet is hard and many people want to believe that they can still eat gluten and therefore NEED a definite diagnosis.
3. A definite diagnosis is needed in the school documentation to hold them accountable to diet adherence.
However, with that being said, I personally don't feel a biopsy is necessary. One question which may help you determine this is if your doctor will write the diagnosis without the biopsy. Our doctor did, so I have a letter for the school, etc. Many doctors will diagnose on the positive IgA for TTG anyways. Lastly, if you feel confident that you can keep true to the diet than why else do you need it? In our case, we had already begun the diet for approx. 3 weeks before we saw the Celiac Specialist at Children's Hospital in Boston. In order to have the biopsy, they told us that my daughter would have to eat gluten for 4 to 6 weeks first. There was NO WAY we could do that. Even my daughter began crying. She did not want to eat any more gluten. So, not only is it invasive, but the time you must continue to subject your child to gluten while waiting for the test to be scheduled could be problematic (even if you don't recognize outward signs). Hope this was helpful!
I am new to message boards...I saw your post about your Dad and I wonder the same thing about my Mom who has also passed. However, if you are really curious, you might be able to find out through genetic testing...at least if one of you parents is still alive? I had my children tested through Enterolab. Their complete panel includes a gene test. One of my daughters had 2 celiac genes (HLA-DQ2 and HLA-DQ8)...this means that both me and my husband have one celiac gene (we are both gluten free now too!). My other daughter had 2 gluten sensitive genes which means that both me and my husband have one gluten sensitive gene. This then allowed me to deduce that both my parents had the genetics to be affected by gluten. My Dad is now gluten free too (at age 80!). Both my daughters improved on the gluten free diet so much that I don't see a huge difference between Celiac Disease and Gluten Sensitivity. The difference is defined in the intestinal damage. A GS individual does not have the damage. But they still have GI symptoms as well as many of the other symptoms in our experience. But...back to your question. If you have been tested genetically and have 2 celiac genes...one had to come from your father. In any case, it sure sounds like he was a candidate. My husband has the same build (but his stomach shrank after going gluten free) and we would have never figured out that he should be gluten free if it wasn't for my daughter. He was not confirmed as a Celiac, but the proof has been in the disappearance of so many symptoms (as well as the reoccurrence upon gluten ingestion).
Siblings can help fill in the blanks too...my sister was also tested (and is now gluten free) and she had 2 gluten sensitive genes which means that one of my parents either had one Celiac gene and one gluten sensitive gene (just like me) or 2 gluten sensitive genes (like my daughter). Hopefully this post was not too confusing.
I read the story about your husband and saw some commonality with my daughter who is now 9 years old. I wanted to tell you that her rages, depression and anxiety were a result of more than one dietary issue. Gluten was indeed the worst offender, but the same behaviors can be induced by other foods. Has your husband tried eliminating or testing for any other food intolerances? The fact that your husband improved on the GFD and then relapsed sounds typical of this problem. I don't think it is recognized medically. I went through alot trying to convince some doctors...they simply do not recognize food as a causative factor. Her psychologist witnessed the dramatic changes in mood and while he referred us to a psychiatrist who prescribed prozac, in the end he became a believer and happily discharged us as she no longer required counseling (we never accepted the prozac route...we eventually proved that we could eliminate her mood swings with food eliminations). It has been 1 and 1/2 years since we started the diet and she has no sign of a mood disorder (unless we make a food mistake, which has not happened in quite some time).
I will tell you that the 2nd biggest offender was dairy...and No, she is not lactose intolerant according to the medical test. However, she was positive for IgA to casein as found through enterolab in a stool test. Casein is a protein in milk that has a very similar molecular structure to gliadin (one of the proteins in gluten). She was also positive for IgG to casein and whey and other specific dairy products she was tested for (cow's milk, etc.). As you may be aware, there are many reports that autistic children significantly improve in mood and behavior on a gluten free/ casein free diet. I don't believe this is a cooincidence.
My daughter's problems were so severe before we started the diet that she had hallucinations, paranoia, anxiety, fits of rage, suicidal thoughts and would smash her head on walls and furniture. Of course there were also numerous physical symptoms, but all the doctors told me that they were all unrelated. She was negative for IgA to Tissue transglutaminase and therefore celiac disease was not considered. I thank God that we were able to figure this all out...otherwise we would be living a very different life. I feel sad about all those out there that are suffering needlessly...please take this into consideration. I am happy to share more info about the other food offenders if you are interested via email or more posts.