Just Curious As To How You Achieved Diagnosis

[Chako]

We are very GERD familiar here in our family and this can be often diagnosed easily by symptoms and by response to meds. The general feeling I am getting from looking around here is that many have either self diagnosed for Celiac based on symptoms and by response to a gluten free diet rather than waiting for biopsies and bloodwork. I understand you do not get a false positive but what worries me is how many may get a false negative, especially for children under 5 years of age and remain on gluten to do damage. It also seems to me that many here have used Enterolab for testing and I am wondering if that testing can be done through your GI as well?

Thanks.

[ravenwoodglass]

We are very GERD familiar here in our family and this can be often diagnosed easily by symptoms and by response to meds. The general feeling I am getting from looking around here is that many have either self diagnosed for Celiac based on symptoms and by response to a gluten free diet rather than waiting for biopsies and bloodwork. I understand you do not get a false positive but what worries me is how many may get a false negative, especially for children under 5 years of age and remain on gluten to do damage. It also seems to me that many here have used Enterolab for testing and I am wondering if that testing can be done through your GI as well?

Thanks.

I was very ill for a very long time and my children were diagnosed with failure to thrive (DS), GERD, depression and 'the I don't want to go to school symdrome'. They did blood test me for celiac repeatedly but I always came out negative. I was diagnosed by my allergist through an elimination diet and then that was confirmed by my GI doctor. I was not able to be biopsied because the gluten challenge I had to do made me too sick to make it to the test but my GI diagnosed at that point without it. We then blood tested my children, both came back positive and my DD was biopsied. My son like me saw such an immediate improvement that he also was diagnosed without the biopsy. The true test is improvement on the diet. And gluten effects may more systems than just the gut, it can effect learning and cognition and the muscles and joints also. It is a truely systemic poison for us.

[BRUMI1968]

I've had digestive problems my whole life, mostly unbearble bloating/gas and constipation, but also tummy aches to the point of having Xrays when I was a kid after drinking chalky stuff, ITP (an autoimmune blood disorder), chronic fatigue, and lots and lots of anxiety attacks.

I had years of the Irritable Bowel Syndrome diagnosis (along with a lot of hypochondriac ones).

Finally, two years ago I quit wheat and dairy, like my Ayurvedic (from India) doctor told me to. I felt a lot better, but had to keep adjusting more, like quitting potatoes for example, and watching out for black beans.

When I had my annual exam earlier this month, I got tested for Celiac through blood work at my own request. Since I felt a lot better since quitting wheat, I wanted to be sure I wasn't killing myself with other glutens. (By feeling a lot better I mean digestively - I was still very itchy and exhausted at my exam.) Anyway, she agreed and the blood work came back positive. She did say "mildly Celiac", but I put that down to no wheat for two years. Besides, I'm not sure what "mildly" can mean when you have something with no inbetweens, you know.

I don't want the biopsy and am perfectly happy adhering to the diet and fixing up my kitchen to avoid cross contamination. If my insurance company insists on the biopsy in order to cover stuff for the illness, I'll get it and be grateful that I'm not a person who has harsh instant reactions to gluten. That and living in the States -- I'm being shocked by the wait times in Canada.

Hope that info helps.

[debmidge]

Hubby has celiac - he went thru many drs. who misdiagnosed him w/IBS Colitis Ilietis one accused him of being a drug addict when he was not, finally the last one told him he need mental help. I hold the last one more accountable as the specific blood tests were available then and he should have done an endoscopy and he did not and perhaps in 1994 hubby could have been properly diagnosed. Hubby has had classic celiac gastro symptoms: diarrhea, gas, belching, bloating, malabsorption, etc. and it wasn't hard to miss.

He was down to 128 lbs. during most of this from a high of 170 and none of these numbskulls could think any further than their bank accounts.

So after a 27 year wait he was finally diagnosed with celiac disease in 2003 but the damage has been done. He has a lot of offshoot problems.

[ravenwoodglass]

She did say "mildly Celiac", but I put that down to no wheat for two years. Besides, I'm not sure what "mildly" can mean when you have something with no inbetweens, you know.

IMHO the 'mildly celiac' diagnosis is the same as being a little bit pregnant. My DD was told she was 'a little bit' celiac after her endo. The doctor told her it would be fine if she just continues to eat it. Just keep taking the prescription antiacids and antidepressants until she gets sicker. He also did say that it would be okay if she wanted to follow the diet of course but didn't push it. Naturally he also said they would monitor her progress with periodic endoscopies can you say $$$$$$$$$$$$$$. This is the same doctor who did not want to blood test my husband because he did not have severe D, just GERD, hairloss, skin problems, brain fog and fatigue so bad he has to sleep for a couple hours after every meal. I insisted and guess who's test came back positive.