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If The Diet Isnt Working........

Tasha2004

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Tasha2004 Contributor
Tasha2004
Posted

Just returned from a trip to the primary care dr. with my Mom.

Mom has all the signs that gluten is creeping in somewhere after 20 years on the diet.

The doctor said there is no way to test to see if this is happening, despite my having articles which said otherwise. I suggested we move Mom back to a gastro, as she had not seen one for awhile anyway.

I expected the doctor to say that very thing, but had articles on refractory sprue and other situations which suggested to run some antiboday tests.

So, am venting a bit though the doctor was fairly reasonable after I let her know I had found legit information on this very thing.

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ravenwoodglass Mentor
ravenwoodglass
Posted
Just returned from a trip to the primary care dr. with my Mom.

Mom has all the signs that gluten is creeping in somewhere after 20 years on the diet.

The doctor said there is no way to test to see if this is happening, despite my having articles which said otherwise. I suggested we move Mom back to a gastro, as she had not seen one for awhile anyway.

I expected the doctor to say that very thing, but had articles on refractory sprue and other situations which suggested to run some antiboday tests.

So, am venting a bit though the doctor was fairly reasonable after I let her know I had found legit information on this very thing.

I would get the antibody testing as a starting point and also check and make sure that any thing she comes in contact with is gluten-free. I am trusting you have eliminated gluten from toiletries and shampoos, lotions, hair dye, are careful with pet foods etc. In addition are there any hobbies she has taken up? Glues, paints, plasters, clays and such can be hidden gluten sources as can drywall dust if she is remodeling. She could also have developed a secondary intolerance like lactose, casein or soy.

I hope you get some answers soon.

Tasha2004 Contributor
Tasha2004
Posted
  • Author

We're really trying to think of everything. My Mom had bought a weird Chinese tea, she takes tons of vitamins and we are even questioning the contents of a microwave bag you heat up for muscle pain.

We're looking hard......

Now we're having a rough time getting an appointment with the gastro.

AndreaB Contributor
AndreaB
Posted

It's expensive but have you thought of enterolab. www.enterolab.com You don't have to be on gluten to take the test and if gluten has been sneaking in her levels will still be up there. They also test for dairy, soy, egg, and yeast.

Tasha2004 Contributor
Tasha2004
Posted
  • Author

Andrea it's a good idea, but we dont have the money and today I had a hard time getting her to pay 75 cents for a can of green beans..............eeesh.

aikiducky Apprentice
aikiducky
Posted

Is it a microwave bag of some kind of seeds that you heat up for joint or muscle pain? That could very well be filled with wheat, they often are!

Pauliina

Tasha2004 Contributor
Tasha2004
Posted
  • Author

Pauliina: Yes, it is, and the stupid company wont write me back and let me know what their bag is filled with. Indeed it could be wheat or something with wheat germ oil.

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penguin Community Regular
penguin
Posted

I thought most of those were made from buckwheat or feed corn :huh:

Both are gluten-free...

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      Celiac disease requires both genetic potential and a triggering stress event to activate the genes. Otherwise it remains dormant and only a potential problem. So having the genetic potential is not deterministic for celiac disease. Many more people have the genes than actually develop the disease. But if you don't have the genes, the symptoms are likely being caused by something else.
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      Thanks, I’m still dealing with the pain and tingling and itching and feeling like bugs or something crawling around on my face and scalp. It’s been a miserable experience. I saw my eye doc last week, the eye itself was okay, so they didn’t do anything. I did take a 7 day course of an antiviral. I’m hoping for a turnaround soon! My life is full of stress but I have been on / off the gluten free diet for the last year , after being talked into going back on gluten to have a biopsy, that looked okay. But I do have positive antibody levels that have been responsive  to a gluten free diet. I can’t help but wonder if the last year has caused all this. 
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