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Deades

Help, please, with blood test interpretation

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Quick back story:. I was diagnosed June 1 after having an endoscope looking for a stomach ulcer.  It was totally by chance the celiac was discovered.  My regular doctor prescribed the scope but did not do the test.  Another doctor in the practice did it and told me I had celiac.  I had my kids tested before they went back to college (both are negative) and my doctor asked my daughter why she thought she had celiac.  She said because her mother had it and then he asked who told me I had celiac.  He doesn't think I do.  

Results of the scope:. Mild chronic duodenitis with mild to moderate villus blunting compatible with changes related to celiac disease in the appropriate clinical and endoscopic setting.  No dysplasia or malignancy identified.

i had no physical symptoms but malabsorption issues.  My iron level was 37 and ferritin was 10.2 from blood work November 2016.

just got results from blood work done September.  Iron level is now 147 and ferritin is 86.1. 

I am concluding that I do have celiac.  What do you think?  I go to my doctor on Wednesday, Sept. 13 to talk with him.

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Well, if I were in your situation, I would ignore the doctor who says you don’t have celiac and trust the other one who says you do. There are doctors who just don’t get it! As for the results of your endoscopy, it's very unlikely that you don’t have celiac, in my opinion. If I understand it correctly, your iron and ferritin levels went up thanks to the gluten free diet, right?  

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Well, since I don't have physical symptoms, only absorption issues, can I consume the occasional piece of pizza or dish of pasta without screwing up myself.  I guess I am asking if I will harm myself if I eat gluten on occasion.

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21 minutes ago, Deades said:

Well, since I don't have physical symptoms, only absorption issues, can I consume the occasional piece of pizza or dish of pasta without screwing up myself.  I guess I am asking if I will harm myself if I eat gluten on occasion.

Yeah, it will. The antibodies will flare in the background for weeks up to a month and damage your intestines from even the smallest crumb. Consistant abuse like this will keep damageing it and cause more health issues in the long run. We did not know about mine for years and I ended up with a secondary AI issues a whole list of food allergies, and I can not eat most foods now.    We had another member who ignored their celiac....long story short stuff went bad and they had emergency surgery after which ended up having to use a bag for the bathroom.  We had another member who got cancer and passed away.......I think someone else can link you the post to these. This is not a disease to joke or mess around with it is a life long commitment.  

PS there are plenty of gluten-free options for EVERYTHING now even hot pockets. Stick to gluten-free now and you can still eat them. I can not even consume those anymore due to my damage here is a fun list. https://www.celiac.com/gluten-free/topic/117090-gluten-free-food-alternatives-list/

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5 hours ago, Deades said:

I am concluding that I do have celiac.  What do you think?  I go to my doctor on Wednesday, Sept. 13 to talk with him.

I took a look at your other posts. I'll summarise for others reading. You didn't have the celiac blood tests but were diagnosed via an endoscopy. You also have anemia and osteoporosis I think?

Your doctor doesn't think you have it. Another doctor thinks you do. The questions you're asking suggest you're at least unsure and you seem to be asking for permission to break the gluten-free diet?

There are sadly no half measures. If you have celiac and have occasional gluten you're potentially opening yourself up to very serious health consequences. 

The answer is to either accept the celiac diagnosis and live accordingly or seek further testing. Which would mean a gluten challenge, blood tests and then perhaps a second endoscopy. Given the villous atrophy and apparent positive reaction to the gluten-free diet I think you should accept the current diagnosis but it's a decision only you can take!

Best of luck :)

 

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46 minutes ago, Deades said:

Well, since I don't have physical symptoms, only absorption issues, can I consume the occasional piece of pizza or dish of pasta without screwing up myself.  I guess I am asking if I will harm myself if I eat gluten on occasion.

I can only confirm all that has been said.

Yes, you will harm yourself if you do that. The absorption issues are physical symptoms! Please, try to learn a bit more about celiac.. this forum is a good source of info, for instance. The gluten free diet has to be strict - 100%. Cheating wouldn't pay off because the villi in your small intestine would never get a chance to heal and recover. The function of the villi is that they absorb nutrients - celiacs have damaged villi and that's why they can't absorb nutrients properly (this can result in iron deficiency/anemia by the way - as in your case). Once a celiac goes gluten free, their villi start to heal and this has a positive impact on the body as a whole.

There is a lot more you can learn about celiac - you don't have to read scientific research articles, but please do read basic info that is available.

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Yes you will hurt yourself eating gluten even if you don't have symptoms, although I'd call malabsorption a symptom.  

Some doctors don't seem to think Celiac is real. A doctor I was seeing for something unrelated to celiac recommended a test where radioactivity could accumulate in my small intestine.  I asked if it would harm my intestine because I have celiac.  His response "You probably don't have that".  He said that with no evidence whatsoever.  I'm skinny so I actually look like what doctors think a typical celiac should look like.  I was able to respond, "well I just had a positive biopsy last week."  He never apologized.  I declined his test.

Thank goodness we can treat this disease ourselves by diet without needing a doctor to write a prescription.

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    So, she had small intestinal damage?  Well, the elevated TTG IgA confirms the celiac disease diagnosis, in my non-medical opinion.   Going gluten free can be tough on a teen.  We are waiting for results of my kid’s celiac panel.  She has to be tested every few years since I have celiac disease (she just completed a three month gluten challenge as she had been gluten light).  Her first test was negative.  But since her Dad and I are gluten free, my daughter has learned to adapt to our gluten
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I guess I should have added that she already had an endoscopy and biopsy as follow up to an eosinophilic esophagitis diagnosis. The doctor ordered the bloodwork after getting the results back. She is a picky eater and I swear only eats gluten lol It is going to be a struggle if we have to go gluten free.
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