Self Disgnosis

[woolwhippet]

i had the anti tTG done in may and my result was 4. It needed to be 10 to be positive. So I continued to eat gluten, got terribly sick, stopped eating gluten and got well. My doctor (and I live in a place where you can't up and switch doctors because there simply are not enough doctors to go around) was adament that I must be ill for another reason so ordered barium swallow and enema and stool sample and blood samples galore and the cherry on top was a lactose breath test. So far all tests show nothing (still waiting on a collitis test that is being analyzed at the moment). I know deep in my heart and gut that I am gluten intolerant--otherwise why would I get well when it's out of my diet? I also have an uncle and 3 cousins who are bonified biopsy diagnosed celiacs. I know that if I am gluten free a biopsy would not be accurate. I just couldn't be sick anymore--I had to give up the gluten and live my life (the waitlist here for biopsy is very long). I have ordered the gene test from enterolab as a way to verify celiac disease. Am I on the right track here? Is it worthwhile for me to see a gi specialist? Or is it a waste of time? I wish in some ways I had been diagnosed because some people think this is in my head or that I am following a fad diet. I know biopsy is the gold standard for dx but can celiac be officially diagnosed through diet and the gene test?

[blueeyedmanda]

Many of our board members used postive improvement from diet changes as their diagnosis. If they feel improved after going gluten free alone, that is a good enough reason to not put yourself through the testing. I had already started the testing process as I started the diet. If I started the diet first, I wouldn't pursue the testing....as long as I was feeling better that would be all the proof I needed.

[momandgirls]

A gene test will only tell you if the carry the genetic make up for Celiac Disease. It will not tell you whether or not you have the disease. Most people carry the genetic make up for Celiac Disease, most will never develop the disease. The only way to be "officially" diagnosed is through a doctor and most will require a biopsy - or at least bloodwork.

[MATTW]

i had the anti tTG done in may and my result was 4. It needed to be 10 to be positive. So I continued to eat gluten, got terribly sick, stopped eating gluten and got well. My doctor (and I live in a place where you can't up and switch doctors because there simply are not enough doctors to go around) was adament that I must be ill for another reason so ordered barium swallow and enema and stool sample and blood samples galore and the cherry on top was a lactose breath test. So far all tests show nothing (still waiting on a collitis test that is being analyzed at the moment). I know deep in my heart and gut that I am gluten intolerant--otherwise why would I get well when it's out of my diet? I also have an uncle and 3 cousins who are bonified biopsy diagnosed celiacs. I know that if I am gluten free a biopsy would not be accurate. I just couldn't be sick anymore--I had to give up the gluten and live my life (the waitlist here for biopsy is very long). I have ordered the gene test from enterolab as a way to verify celiac disease. Am I on the right track here? Is it worthwhile for me to see a gi specialist? Or is it a waste of time? I wish in some ways I had been diagnosed because some people think this is in my head or that I am following a fad diet. I know biopsy is the gold standard for dx but can celiac be officially diagnosed through diet and the gene test?

Dear WW.............isn't socilized medcine wonderful! I know many people that have self diagnosed. Here is the painful method. Go off all wheat, barley and rye..i.e. gluten for 4 weeks minimum. 8 weeks better. Remember beer has gluten. Keep a daily diary of what you eat and how you feel. Return to gluten for one week; you will know REAL quick. I have given this method to over 20 people in the last 3 years; IT HAS NEVER FAILED. If it is in your family, you have a higher risk than normal; if you are of Irish decent, even higher. I have learned to ignore all comments about my diet issues. I have discovered more stores carry gluten free food. The baker for the Whole Foods Stores in America is a celiac and has developed an entire line of baked goods. I spent a week in September in Vancouver and Victoria area and found gluten free food in super markets and also found restaurants understanding. Blood tests are not always a sure thing and, as you suggest, if you have been off gluten for a while the biopsy may be midleading. The most important thing is how you feel. good luck...matw

[hathor]

As already pointed out, the gene test won't tell you if you have celiac. Most people with the "celiac genes" don't have celiac. The important thing is that your dietary response already pretty much has demonstrated gluten intolerance. My motto is if something hurts, don't do it. Nobody NEEDS gluten for health.

Why didn't you order the Enterolab tests for gluten intolerance? This will give you something more medical if you feel you need it, even if your particular doctor doesn't accept Dr. Fine's test. At least with that test, you don't have to eat gluten.

Are you well now off gluten? Then just continue. Your doctor should realize that there are quite a few false negatives with blood tests. It seems silly to continue to be sick and accumulate enough damage that the antibodies show up in the blood or the villi have been damaged.

It doesn't sound like your doctor will diagnose celiac from dietary response and genetic testing. But why care what this doctor says?

[woolwhippet]

If it is in your family, you have a higher risk than normal; if you are of Irish decent, even higher.

Thanks--I may try your method if I have the courage! Yes, I am Irish. And it is my Irish side that all are confirmed celiacs. I guess the whole Irish conncetion is true then!

[woolwhippet]

Why didn't you order the Enterolab tests for gluten intolerance? This will give you something more medical if you feel you need it, even if your particular doctor doesn't accept Dr. Fine's test. At least with that test, you don't have to eat gluten.

Are you well now off gluten? Then just continue. Your doctor should realize that there are quite a few false negatives with blood tests. It seems silly to continue to be sick and accumulate enough damage that the antibodies show up in the blood or the villi have been damaged.

You know, I am now wishing I had ordered the full panel but I was trying to be cost effective! I had justified in my mind that if I have the genes then I will never again eat gluten so as not to trigger a response. I also thought it would be a good way to rule it out--you know, no genes, no celiac. Wishful thinking!

[Tim-n-VA]

My only concern is that you use the terms "gold standard" and "official diagnosis". If you want something in a medical record that all doctors will accept, you need to go the biopsy route.

But, if you just want to feel better, the dietary response is more than sufficient.

[Gemini]

i had the anti tTG done in may and my result was 4. It needed to be 10 to be positive. So I continued to eat gluten, got terribly sick, stopped eating gluten and got well. My doctor (and I live in a place where you can't up and switch doctors because there simply are not enough doctors to go around) was adament that I must be ill for another reason so ordered barium swallow and enema and stool sample and blood samples galore and the cherry on top was a lactose breath test. So far all tests show nothing (still waiting on a collitis test that is being analyzed at the moment). I know deep in my heart and gut that I am gluten intolerant--otherwise why would I get well when it's out of my diet? I also have an uncle and 3 cousins who are bonified biopsy diagnosed celiacs. I know that if I am gluten free a biopsy would not be accurate. I just couldn't be sick anymore--I had to give up the gluten and live my life (the waitlist here for biopsy is very long). I have ordered the gene test from enterolab as a way to verify celiac disease. Am I on the right track here? Is it worthwhile for me to see a gi specialist? Or is it a waste of time? I wish in some ways I had been diagnosed because some people think this is in my head or that I am following a fad diet. I know biopsy is the gold standard for dx but can celiac be officially diagnosed through diet and the gene test?

I often wonder why anyone with diagnosed Celiacs in their blood family would doubt what their bodies are telling them when they have symptoms? Not trying to be a pain here but if you know in your gut that it's gluten that's giving you a problem AND your blood relatives are diagnosed Celiacs, the odds of your having it also is sky high. If you fail to recover 100% on the gluten-free diet, it may be time for an endo to see what else could be going on but learn to trust what your body and intuition are telling you. Otherwise, you'll go a long time being jerked around by the medical profession as their standard of diagnosis makes you wait until you are at end stage of the disease and very sick. The only other reason for pursuing testing would be if you absolutely need to see it on a report to stay on the diet.

Good luck and hope you feel better!

[hathor]

You know, I am now wishing I had ordered the full panel but I was trying to be cost effective! I had justified in my mind that if I have the genes then I will never again eat gluten so as not to trigger a response. I also thought it would be a good way to rule it out--you know, no genes, no celiac. Wishful thinking!

I guess my response was guided by the fact that I don't have a "celiac gene" but I still have symptoms, positive results for all of Enterolabs' fecal tests (for everything ), and a positive result from the diet.

It is hard to tell about whether different nationalities have more celiacs because the rate of testing and the awareness of the doctors seems to vary so much. There is a lot in Italy. But there, all children are tested. Everybody knows about the disorder. Here it seems a good deal of the time folks have to do their own research to figure out what might be wrong and then convince doubting doctors to test.

I've heard the Irish idea, of course. I just ran across an article once that disputed the notion. I think it was one of those things where more tests were ran in Ireland, than in Scotland or England, the Netherlands, etc. I don't seem to have saved the link, though

[EBsMom]

Thanks--I may try your method if I have the courage! Yes, I am Irish. And it is my Irish side that all are confirmed celiacs. I guess the whole Irish conncetion is true then!

I used that method, but accidentally! I went gluten-free with my dd, ate that way for over a month, then went on vacation to (this is the ironic part) the west of Ireland. I consumed all the scones, soda bread and Guinness that I could hold....and was rewarded with shooting stomach pains, horrible bloating and C that took days to resolve.....oh, and a head fog that lasted for a couple of weeks. Made a believer out of me FAST! I truly thought that gluten was solely my dd's problem in the beginning. Now my ds is gluten-free as well. It's truly a family affair. Just found out today that my b-i-l has been diagnosed with celiac via bloodtest. We "only" have Enterolab results, so we weren't taken as seriously....they're all paying attention, now, though. Anyway, I'm digressing....

The thing that matters the most is your dietary response. It doesn't matter what a test shows if the diet doesn't work for you....just as it doesn't matter what a test *doesn't* show if the diet *does* work for you. The diet seems like a big deal at first, but it's been almost 5 months for us and it's SO much easier now! If you can't get any other anwers, try the diet and see what happens! Oh, my dh and I both have Irish roots as well. My poor kids got hit with it from both sides, as it turns out! Good luck to you!

Rho

[CMCM]

Let me ask you this: If you had the gene test and found out you did not have the celiac gene, only gluten sensitivity genes (which most people will have), and IF the gluten free diet eliminated your symptoms, would you eat gluten and suffer the symptoms just because you don't have the obvious gene?

Celiac disease is the extreme end of the gluten sensitivity spectrum, and is probably about 3% of the people with gluten symptoms. Everyone else with symptoms is gluten sensitive to varying degrees. The solution for the whole thing is avoiding gluten.

If you are sick and tired of all your symptoms, that should be motivation to change your diet. Remember that celiac disease is a condition which exists WHEN and IF you eat gluten. If you eliminate gluten, the celiac disease part of it goes again and once again you have the PREDISPOSITION to getting celiac disease, but you not longer have it. My mom has TWO celiac genes, and when she got very sick (nearly died) in her mid 40's, she went gluten free. That was over 40 years ago and if she got an endoscopy today they would tell her she does NOT have celiac disease. Having two genes, her reactions are severe and immediate, and if she gets even a smidgen of gluten she gets violently sick.

By the way, after her initial diagnosis endoscopy, she went gluten free and then maybe 8 months later she had a follow-up endoscopy, which showed that most of her intestines had repaired the villi and she was almost back to normal after only that small amount of time.

So if you are gluten sensitive OR celiac, you need to stop eating gluten. If you DO have celiac disease, your body will repair itself as long as you stay gluten free. Either way, gluten sensitive or celiac, you should want to eliminate your symptoms and prevent any possible organ/tissue damage that the gluten sensitivity could also cause.