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Gez

Latent Celiac Or Not?

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Hi Everyone!

I posted here before by biopsies. It seems that although my blood was fine there were suspicious findings in the biopsies and my Doc says I need to follow a gluten free diet. It seems there was inflammation that showed the gluten was causing me problems.I was doing this anyway almost all the time except for accidents and was feeling much better.

I was diagnosed with a hiatal hernis 12 years ago but this Doc says i don't have one.How can this be?? I always have heartburn and reflux which i control with diet but sometimes it is awful. I'm very confused and wondering if in fact he remebered to examine my oesophagus properly during the biopsies. So I have two questions and would be very grateful if anyone could help me with them.

Does anyone know if it is possible that he could have missed a hernia because he was concentrating on doing the biopsies and does the slight inflammation that they found really indicate latent celiac disease. H

e said if i carried on eating gluten I would probably have a lot of damage in ten yeaRS TIME.

Also with this diagnosis of latent coeliac i am not entitled to prescription bread etc.Is this usual?To my mind either gluten is damaging me because I am coeliac and therfore i should be recognised as someone who is coeliac and be prescribed bread etc. or I'm not coeliac and can carry on eating gluten.

Thanks for any response

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Gez, I take it you are from the UK? I don't know what the laws are there, so I can't comment on that. The one thing I do want to say is, I do not believe in latent celiac. That's like telling someone they are a little pregnant! Either you are pregnant or you aren't! Either you are celiac, or you aren't! If a doctor can say the word celiac to you, then you should be gluten free. I feel it is a disservice to the patient for the doctor to tell him/her that they have latent celiac and that they should be as gluten free as possible. I have a friend who's son has down's syndrome and he has been diagnosed with latent celiac disease. The doctor said to keep him as gluten free as posible. The poor kid is so constipated much of the time, he needs to be completely gluten free--the doctor is wrong, the doctor needs to be replaced!!! Telling a patient this gives them a false sense of security. I feel it also endangers their/your health.


Deb

Long Island, NY

Double DQ1, subtype 6

We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!

"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!

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I'm not sure that inflammation alone indicates Celiac, but damaged villi does, and AFAIK that is what doctors usually want to see before they give a positive diagnosis.

Now about the heartburn. That is a common problem for Celiac sufferers. However, there may be something you can do to resolve/cure it. Have you ever tried apple cider vinegar? I'm referring to the real thing, not just flavored. Many have reported that it is very effective, and apparently has cured the problem for some. Not having heartburn, I don't have specifics, but a search for apple cider vinegar should turn up the info you need to try it the right way.


A spherical meteorite 10 km in diameter traveling at 20 km/s has the kinetic energy equal to the calories in 550,000,000,000,000,000 Twinkies.

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Your doctor found celiac changes in the biopsy but apparently you still have some villi left, so he has called it latent celiac since total villi destruction is the technical criteria for a celiac diagnosis. I also hate it when doctors use this term since it implys that it is not yet celiac so you can go ahead and keep poisoning yourself until all the villi are destroyed and you can be classified. Your doctor was a good one, he is absolutely correct about your needing to be gluten free, you do NOT want to get to the point where all those villi are gone, you want to prevent that from happening. It could take years, as he stated but meanwhile the antibodies are flowing through your bloodstream impacting brain, muscles, joints, liver, gallbladder etc. The pain that you thought was from a previously diagnosed hernia could very well be related to celiac. It will most likely resolve gluten-free, and yes your doctor would have seen that hernia on the endo if there was one there.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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Thank you everyone! Very informative . I hope to be free of heartburn as I progress cutting out gluten. yes, i have sime raw cidre vinegar and i'll try it! thanks again

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Thank you everyone! Very informative . I hope to be free of heartburn as I progress cutting out gluten. yes, i have sime raw cidre vinegar and i'll try it! thanks again

Another thing that may help is good ole Pepto Bismal, name brand. It works like magic for me so I thought I would mention it in case the vinager doesn't help.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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