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Doctor Didn't "say" I Have It

ardere

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ardere Newbie
ardere
Posted

First time poster needing some advice. I'm unsure of my diagnosis given by my doctor because we only did a gene test which came back positive. I have quite a history of evidence to consider. I know that most of you aren't doctors but it would be great if I got some opinions.

 

- Haven't been able to eat cakes since I was about 11(over 9 years ago), they always made me as bloated as a pregnant heifer.

- Over 2 years asgo I was diagnosed with lactose intolerance and was still able to eat bread and what not.

- Just under a year ago I started having problems with eating bread and I went gluten-free on my own accord. The doctor did a blood test then but since I hadn't been eating nothing came up and he said I was just gluten sensitive. 

- I avoided gluten but skipped every now and then and felt ill... Come last week I got my results from my DNA test from doc who said I was positive but we didn't do a biopsy cause I was not interested in feeling bad for 6 weeks and he agreed that was for the best.

- When I told my mum it was a genetic thing she said that her and my grandma don't eat bread because it makes them blotted!(they never got tested)

 

What I'm questioning is do I have celiac? Doctor never said I have celiac, just that my results are positive. At one point I thought it was all in my head before I spoke to me doctor. Do you need to have a positive gene and biopsy test to be diagnosed? Even ATM I have reflux and my stomach won't stop grumbling from a "gluten free pizza base" I ate less than week ago which was contaminated. 

 

Sorry for the rant, de Nile isn't just a river in Egypt!

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1desperateladysaved Proficient
1desperateladysaved
Posted

My doctor believed I had celiac when she saw my genetic results.  Mine showed 2 copies of HLA DQ2 and 2 copies of HLA DQ8.  I had been off gluten for 3 weeks.  I looked 5 months pregnant.  I shared my symptoms after going gluten free.  She told me I had celiac and should never eat gluten again.  Over time, since, I read the forum so much I discovered that you can have the genes without the disease.  This made me and other doctors question my diagnosis.  I did not think it would be ethical to eat the gluten for me to test, so I went on.  Since, I have found many things that back the diagnosis.

 

I have food intolerances beyond gluten.  I drank so much milk as a child, yet the dentist felt my bone mass was low.  The enamel had disappeared off my teeth when I was 17 years old.  I had foggy brain and fatigue that went away on the gluten free diet.  I had heel pain in one foot or the other for a few years.  When I went gluten free, both feet began to hurt at the same time.  Then the pain went away and never came back!

 

I spoke with a new MD the other day.  She didn't seem to be "buying my celiac"  I told her that I had been deficient in vitamin B, iron, Vitamin D, and magnesium (perhaps others) in spite of the fact I supplemented them.  When she heard that these levels had come up, she seemed to relax.  You might try to get as early of a baseline on nutrient levels as possible and compare later readings.  I think if you are eating a healthy diet, but have low nutrient levels it would indicate something is wrong with digestion.

 

If you weren't eating gluten when you did the blood test, it could be false negative.  One doesn't usually have antibodies to something they haven't eaten recently.  But are you avoiding all gluten or just major sources?

 

Hopefully, you will get a definitive enough for you diagnosis.  If you should be totally gluten free  you will do it.  I wish you the best in good health.

 

D

kareng Grand Master
kareng
Posted

A doctor isn't likely to diagnose you with Celiac based on a gene test.  About 30% of the population has the gene but only about 1% have Celiac.  If you want a "real" diagnosis, you would need to eat gluten for a few months and get re-tested.

 

At this point, you know gluten makes you feel bad.  Its up to you if that is enough of a reason to eat gluten-free.

 

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ardere Newbie
ardere
Posted
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He said it's probably not worthwhile doing a biopsy because of prior symptoms. Are biopsies the only conclusive way to know if you have celiac?

nvsmom Community Regular
nvsmom
Posted

Most doctors seem to like to diagnose with a biopsy or a biopsy with blood tests. Some doctors are willing to diagnose with positive blood tests alone,  Some doctors are aware that having the positive genes, a family history of celiac disease, and reactions to gluten makes it pretty likely you have celiac disease, but I'm not sure if the give a diagnosis with that or not - probably depends on the doctor.

 

Welcome to the board, BTW.  :)

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