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Doctor Has Me Confussed

dolly

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dolly Apprentice
dolly
Posted

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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buffettbride Enthusiast
buffettbride
Posted

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.

kbtoyssni Contributor
kbtoyssni
Posted

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.

dolly Apprentice
dolly
Posted
  • Author

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)

Ridgewalker Contributor
Ridgewalker
Posted
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.

kbtoyssni Contributor
kbtoyssni
Posted
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 :)

debmidge Rising Star
debmidge
Posted

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.

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ravenwoodglass Mentor
ravenwoodglass
Posted
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.

hathor Contributor
hathor
Posted

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:

Open Original Shared Link

dolly Apprentice
dolly
Posted
  • Author

I want to thank all of you for all of your help and advice.

Being back on the gluten my head is swimming. I can barely think straight.

I have a lot to think about. Thanks so much for everything!!!

dolly Apprentice
dolly
Posted
  • Author

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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    • knitty kitty
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