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dolly

Doctor Has Me Confussed

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Saw my GI doc yesterday and he wants to do the endoscopy which I agreed to since I decided it was better to know for sure.

But, here is where he confussed me. He said that either you have Celiac and are allergic to gluten or you are not. Having Celiac and an allergy to gluten are one in the same. If you don't have Celiac, then you shoud go about eating gluten even if it doesn't make you feel good.

So, is that what all of you understand about Celiac and gluten sensitivity as well???????

I was under the impression that they were two different things (Celiac and/or gluten sensitive).

Can someone help me with this?

Thanks!!!

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Your doctor sounds retarded.

Any chance you could find a different doctor with better knowledge before springing for an endoscopy? I'm not saying the endo isn't necessary, espec. if the medical diagnosis is important to you, but find someone who knows what they are talking about.

Have you had the blood tests yet?

You don't need a doctor's permission to stop eating gluten if it makes you feel better, even if endo and blood tests are negative for Celiac.

If the gluten-free diet doesn't seem to help you, then you would want to look into other possible diagnosis or trying other food eliminations.

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A couple things:

-Celiac is not an allergy. It is an autoimmune disease.

-By the time you can get diagnosed with celiac through blood test or scope, you already have a lot of damage to your intestines.

-If you test negative for celiac it means you either have celiac but don't have enough damage, you "just" have a gluten intolerance, or you don't have an issue with gluten at all.

-If you have a gluten intolerance, gluten still makes you sick, but you may not get the same kind of intestinal damage as you would with true celiac.

-Whether you have celiac or gluten intolerance, the only treatment is a gluten-free diet. If you have gluten intolerance, you should not eat gluten. Why would you continue to eat something that you know is making you sick?

-Traditional medical testing will not detect a gluten intolerance. You could try something like Enterolab instead.

In my opinion, gluten intolerance and celiac are the same disease, celiac is just the more advanced stages. I also believe that dietary response is a perfectly valid method of diagnosis.


Gluten-Free since September 15, 2005.

Peanut-Free since July 2006.

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kbtoyssni & buffettbride,

Thanks for responding!!!!!! Thanks for sharing your thoughts and info as well.

I got the blood work done and one of the test came back abnormal.

I did the gluten free diet challenge and I felt 100% better so when this endoscopy is done then I am going off gluten. The doc I went to was part of a practice that was suggested on this website. Frankly, I am so sick of doctors at this point that I just want to get the endoscopy done with so I can move on with my life.

I only am getting the endoscopy done so that I will have the peace of mind knowing once and for all, if I have Celiac or not. Mostly because of the complications that come from long term damage that comes from Celiacs.

But, my instincts tell me that this is more of a food allergy or sensitivity than true Celiacs. When I asked the Doc about that yesterday he said that there is no such thing. Either you have Celiacs or you are imagining it.

So, I guess what I am really asking is if I am negative for Celiac is there another kind of doc I should go to or just stop eating gluten and be happy? thanks! (sorry, I am feeling frustrated by this whole situation)

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If you don't have Celiac, then you shoud go about eating gluten even if it doesn't make you feel good.

What kind of doctor tells someone they should continue eating something that makes them feel like crap?! Especially something you DON'T NEED to be healthy? That is ridiculous.


-Sarah

--Son, Lucas, age 7. Gluten-free since May 2007

--Son, Ezra, age 5. Gluten-free 10/13/07. Bipolar tendencies, massively improved on gluten-free diet! He's also allergic to a jillion antibiotics.

--My mother has Celiac Disease, dx'ed by Positive Blood Tests and Biopsy. Diagnosed Sarcoidosis 6/08.

--Myself, Gluten-free since 8/07

Time heals all hurt of heart... but time must be won.

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So, I guess what I am really asking is if I am negative for Celiac is there another kind of doc I should go to or just stop eating gluten and be happy? thanks! (sorry, I am feeling frustrated by this whole situation)

Usually a GI is the only doctor you can see about celiac. However, some people choose to see a natural remedies type doctor if they have a lot of vitamin deficiencies and other health problems caused by celiac. I would probably go gluten-free for a few months and if you continue to have major problems then look into these types of doctors. Some people also see a nutritionist, but most have found that you'll get more information from this site than from a nutritionist. If you don't live the disease, I don't think you can understand everything you need to consider to have a truly gluten-free diet. I did not see any doctors for additional help after I diagnosed myself :)


Gluten-Free since September 15, 2005.

Peanut-Free since July 2006.

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It is entirely possible to have celiac and a wheat allergy together.

Both are immune disorders; but celiac is much more serious and complicated.

You cannot determine a wheat allergy from endoscopy.

Wheat allergy will give you gastro symptoms too and skin conditions.

People who don't know any better lump these two conditions interchangably. They are two entirely different health issues. Both are treated by diet. A wheat allergy diet will overlap with a gluten free diet as many foods which are wheat free are gluten free; however a wheat free product doesn't mean it's gluten free.


Husband has Celiac Disease and

Husband misdiagnosed for 27 yrs -

The misdiagnosis was: IBS or colitis

Mis-diagnosed from 1977 to 2003 by various gastros including one of the largest,

most prestigious medical groups in northern NJ which constantly advertises themselves as

being the "best." This GI told him it was "all in his head."

Serious Depressive state ensued

Finally Diagnosed with celiac disease in 2003

Other food sensitivities: almost all fruits, vegetables, spices, eggs, nuts, yeast, fried foods, roughage, soy.

Needs to gain back at least 25 lbs. of the 40 lbs pounds he lost - lost a great amout of body fat and muscle

Developed neuropathy in 2005

Now has lymphadema 2006It is my opinion that his subsequent disorders could have been avoided had he been diagnosed sooner by any of the dozen or so doctors he saw between 1977 to 2003

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I only am getting the endoscopy done so that I will have the peace of mind knowing once and for all, if I have Celiac or not. Mostly because of the complications that come from long term damage that comes from Celiacs.

If this is the only reason you are doing an endo it is not a good one. Endo's are not perfect and they can conclusively tell you that you have enough damage for the celiac label but they can not definately say you don't have it. The long term damage from gluten intolerance is just as bad as the damage that true biopsy proven celiac is. You need to listen to your body. Your GI is woefully ignorant about celiac, I would lay a bet he doesn't even know that gluten can cause neuro symptoms. Ask him and see the look he gets on his face. What you do is up to you but with a positive result to the diet your body is already telling you all you really need to know.


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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The problem is that there are different schools of thought among doctors. It sounds like you happened across one of the reactionary ones that don't know what they are talking about. Would he counsel continuing smoking, even if it made a patient feel bad, because there was no observed lung cancer ... yet?

Here is a more enlightened view, at least IMHO:

https://www.celiac.com/articles/1101/1/Glut...ewey/Page1.html

You don't need to doctor's permission not to eat something.

You could just go with Enterolabs. This would give you a lab result that can tell you if you are reacting to gluten, assuming that is important to you. They also test for other things that many gluten sensitive folk can't handle. About early diagnosis:

https://www.enterolab.com/StaticPages/EarlyDiagnosis.htm


McDougall diet (low fat vegan) since 6/00

Gluten free since 1/6/07

Soy free and completely casein and egg free since 2/15/07

Yeast free, on and off, since 3/1/07 -- I can't notice any difference one way or the other

Enterolab results -- 2/15/07

Fecal Antigliladin IgA 140 (Normal Range <10 units)

Fecal Antitissue Transglutaminase IgA 50 (Normal Range <10 units)

Quantitative Microscopic Fecal Fat Score 517 (Normal Range <300 units)

Fecal anti-casein (cow's milk) IgA antibody 127 (Normal Range <10 units)

HLA-DQB1 Molecular analysis, Allele 1 0501

HLA-DQB1 Molecular analysis, Allele 2 06xx

Serologic equivalent: HLA-DQ 1,1 (subtype 5,6)

Fecal anti-ovalbumin (chicken egg) IgA antibody 11 (Normal range <10 units)

Fecal Anti-Saccharomyces cerevisiae (dietary yeast) IgA 11 (Normal range <10 units)

Fecal Anti-Soy IgA 119 (Normal Range < 10 units)

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I have thought about everything you all have said and how absolutely ill I feel after 3 days back on the gluten-and, I have decided to cancel that proceedure (the endoscope) and stop eating gluten. I just don't think that I will survive if I keep eating gluten. So, I will look into endolab and see what that entails. But, I thank you for allof your help. It has really helped me to see things clearly.

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