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What If Tests Are Negative?

marogers5

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marogers5 Newbie
marogers5
Posted

I live in a small Canadian town and getting a family dr is impossible so I have had to rely on the walk in clinic.  This means I get one of the 4 dr in town but not always the same dr.  I recently had some blood work ( i don't know what) and that dr said I definitely did not have celiac. I went back in and got a different dr and she said I sounded like a classic celiac and ordered a biopsy.  She has agreed to accept me as a new patient!  Anyways, I had the biopsy last Tues.  that dr met with me after and said everything looked good but I'd have to wait for the biopsy results in 10-14 days.  I am actually scared I will get negative results and then I have no idea where to go from there.  I recently heard that the dr that had studied gluten sensitivity has recanted his claims and now says there is no such thing?  My farm community and all my farm family are critical of the anti gluten "propaganda" and I know unless I have a celiac diagnosis I will not get much support to go gluten free in my house!

 

My symptoms first started 20 years ago in highschool after I had mono.  I began to alternate between constipation and diarrhea and in my 20's I had a colonoscopy and was told everything looked fine, probably a "little bit of irritable bowel" I also had  endometriosis that I was dealing with, this seemed to clear up after my 3rd baby was born.  This last year my symptoms have seemed to really progress.  I have become anemic and can not keep my iron up with supplements and diet.  I had a couple of migraines, which I have never had before. I get rashes on my arms or thighs.  I am exhausted and weak.  I have gained weight even though I am eating less.  I have to make myself eat most times because after I eat I get a headache and nauseous. Sometimes after eating I  feel tired and short  of breath. I have had asthma since childhood.    I feel like I am in a fog and get very irritable. Sometimes I am constipated and other times I have terrible cramps and diarrhea.  Sometimes I wake up in the middle of the night with diarrhea. Over the years I have slowly quit eating as much bread and pasta or dairy because I just  don't feel good after eating it but this last year has became worse and worse.  WHat do you guys think of the FODMAP plan?

 

 

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bartfull Rising Star
bartfull
Posted

OK, here's my opinion:

 

First of all, are the rashes really itchy? If so, you might have DH. (Go to the dermatitis Herpetiformis section here and you'll get a ton of information about it, as well as pictures you can compare your own rash to.) The thing is, many people with DH test negative because the disease manifests in the skin rather than in the gut.

 

Second of all, you don't need anyone's permision to go gluten-free. If your family is supportive, to heck with the rest of the community. And if being gluten-free makes you feel better, whether you have a diagnosis or not, go gluten-free!

 

I haven't heard about gluten sensitivity being bogus, but I know there are several folks here who have tested negative, but gluten makes them extremely ill. Whether it's gluten sensitivity or undiagnosed celiac, the remedy is the same.

 

Go to the Newbie 101 thread in the coping section to read up on testing, the diet, avoiding cross-contamination, and so much more. Then come back and ask lots of questions. We're here to help. :)

Tricia7 Newbie
Tricia7
Posted

Support or not you have to do what is best for you.  Here in the US, no one else would know your test results besides you and your doctor unless you tell them, I wouldn't think it would be different in Canada. So even if your test doesn't show signs of Celiac, you don't have to disclose that to everyone you know.

 

I am still new to this myself, but I think you should try going completely gluten free.  If you've been reading here or on other sites you'll find Gluten is in a lot more than just breads and pasta. The last thing that "glutened" me was a Sugar free drink mix! (walmart's version of crystal light) I didn't think to look at the label until I felt bad and then saw it right there on the label : "wheat " Now I read labels all the time.

 

If your symptoms don't improve when you're 100% gluten free, something else might be the issue, and you can go from there.

kareng Grand Master
kareng
Posted

Support or not you have to do what is best for you.  Here in the US, no one else would know your test results besides you and your doctor unless you tell them, I wouldn't think it would be different in Canada. So even if your test doesn't show signs of Celiac, you don't have to disclose that to everyone you know.

 

I am still new to this myself, but I think you should try going completely gluten free.  If you've been reading here or on other sites you'll find Gluten is in a lot more than just breads and pasta. The last thing that "glutened" me was a Sugar free drink mix! (walmart's version of crystal light) I didn't think to look at the label until I felt bad and then saw it right there on the label : "wheat " Now I read labels all the time.

 

If your symptoms don't improve when you're 100% gluten free, something else might be the issue, and you can go from there.

Which drink mix? I have never seen one with wheat. Wouldn't see the need for it but I want to look the next time I go to Walmart.

And I agree - no one has to know what your actual diagnosis is or isn't. Find some way to word it that will work for you.

BlessedMommy Rising Star
BlessedMommy
Posted

I'm not DX'ed and honestly very few people really care whether I have celiac or not. It's just not that big of a deal. As long as you know in your mind what you need to do and are 100% strict and consistent people will quickly figure that out and those who are true friends will support you.

 

My inlaw's went so far as to buy me a new grill for gluten free only items with their own money. :)

Tricia7 Newbie
Tricia7
Posted

Which drink mix? I have never seen one with wheat. Wouldn't see the need for it but I want to look the next time I go to Walmart.

And I agree - no one has to know what your actual diagnosis is or isn't. Find some way to word it that will work for you.

 

The drink mix I had was - "Great Value Orange Early Rise Drink Mix, 5 count" Open Original Shared Link

 

I used to like this instead of OJ to save on calories/sugar in the juice 

 

At least crystal light (owned by Kraft) has started labeling their products as gluten free.

kareng Grand Master
kareng
Posted

The drink mix I had was - "Great Value Orange Early Rise Drink Mix, 5 count" Open Original Shared Link

 

I used to like this instead of OJ to save on calories/sugar in the juice 

 

At least crystal light (owned by Kraft) has started labeling their products as gluten free.

OK. It doesn't actually have wheat as an ingredient. It's a " may contain"/ possibility of cc statement.

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