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Negative Test, Normal Ct Scan, Anything I Can Do?

torolf

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torolf Newbie
torolf
Posted

Hey all, I

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Emilushka Contributor
Emilushka
Posted

It sounds like whatever it is that you have, you can't tolerate gluten. I suggest you take that as reality and just go with it. The tests for Celiac are imperfect. It's worth it to talk with a GI doc to make sure you have the documentation in your chart, but if you're miserable with only a partial serving of breaded shrimp, I think you have your answer.

Please listen to your body. Let your guts heal. I hope you continue to feel wonderful on the gluten-free diet!

torolf Newbie
torolf
Posted
  • Author

but if you're miserable with only a partial serving of breaded shrimp, I think you have your answer.

Please listen to your body. Let your guts heal. I hope you continue to feel wonderful on the gluten-free diet!

That's what I'm pretty much gonna end up doing. My parents don't even seem to think I have an issue, which sucks that they apparently don't believe me. :/

Skylark Collaborator
Skylark
Posted

A CT scan does not diagnose celiac disease. If your doctor thinks it does, run screaming and get another doctor! There are blood tests, and an intestinal biopsy done by endoscopy. Hopefully you were tested for total IgA, as in that case the IgA versions of the tests are the correct ones. If you want to continue to follow up for a medical diagnosis, you would need to keep eating gluten and get the endoscopy. There are definitely celiacs with villous damage who do not show positive on the blood tests.

You are pretty obviously gluten intolerant if not celiac, and if you're going to eat a celiac diet it really doesn't matter one way or the other whether you are diagnosed. We don't get any help with the cost of gluten-free foods as folks do in Europe. You are an adult, and you need to make your own decisions about what to eat or not eat. Although it's nice to get validation, it really doesn't matter what your parents think. If gluten makes you sick, the sensible thing is to not eat it.

Emilushka Contributor
Emilushka
Posted

That's what I'm pretty much gonna end up doing. My parents don't even seem to think I have an issue, which sucks that they apparently don't believe me. :/

Nobody's perfect, including (obviously) your parents. In this case, I think you know what to do. I wish I could tell you that there's some magical thing you could do to change their minds, but really, it sounds like you just need to keep to the gluten-free diet and ignore them.

Sometimes the only thing you can do is take care of yourself and ignore the nay-sayers. It's OK. You're not alone - you have us!

SGWhiskers Collaborator
SGWhiskers
Posted

I just wanted to clarify that while the assistance with the cost of food may be less here in the US, there is a tax deduction available for us. Save your grocery store receipts and then get a comparison of what it would have cost for the same gluten items. Subtract the difference. If that totals more than 7.5% of your income, it can be used as a tax deduction (not tax credit unfortunatly).

Alternatively:

Deposit funds into your flexible spending health account and that cost difference can be deducted from the account. You don't need to meet the 7.5% standard. Before you deposit funds into the flex spending account, confirm that they honor medically necessary diets such as a gluten free diet in their allowable expenses.

With either of these two options, you will need a letter from your doctor stating celiac and a medically necessary diet.

It's up to you if a serious gluten challenge is worth going through just for the tax deduction. You will probably need to itemize each pancake mix, cereal, and flour if you use the flex spending account. A deduction will be reimbursed at roughly 30% of the cost difference vs a tax credit which is reimbursed at 100%, but is not available to us.

Skylark Collaborator
Skylark
Posted

I just wanted to clarify that while the assistance with the cost of food may be less here in the US, there is a tax deduction available for us. Save your grocery store receipts and then get a comparison of what it would have cost for the same gluten items. Subtract the difference. If that totals more than 7.5% of your income, it can be used as a tax deduction (not tax credit unfortunatly).

In reality, I don't think anyone would spend 7.5% of income on difference between gluten-free and normal foods. It's too much of your paycheck with low income, and too much food to eat with high income. I can see possibly qualifying for the deduction in a year where you had extensive health problems and a lot of other medical bills.

That's good to know about the flexible spending, although I don't have that as a benefit right now.

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