Frustrated And In Denial

[lmtnarny]

i have been suffering with a horrible rash on my arms lower back and lower legs for eight months now. i recently learned that i may have celiac. my physician does not see a need to test if my diet clears up my rash. he put me on an oral steroid and that has cleared up my rash which is a huge relief!!! i have so many questions!! i have been on a gluten free diet for two weeks and yesterday ate some things that i thought were safe (sausage from a hometown locker for ex.), and i woke up this morning and i am itching and the rash is back on my arms!! i want to cry, this has taken over my life and it is so frustrating! i am not sure if the steroid has cleared everything and i have something else going on, or if i truly have celiac. can someone tell me about insurance and how it has affected them. my physician doesn't want me to be diagnosed due to insurance does this make sense?? any help and support would be greatly appreciated!!

[flourgirl]

Hi! Sorry to hear about your suffering! Many of us have been in your shoes....you've come to a good place for help, answers and commiseration. I'm confused about your doctor's attitude. Is it because you have no insurance, or do you have insurance that does not cover the cost of tests? In any case.....money should not even be a consideration when it comes to your health and getting better!

I had Dermatitis Herpetiformus......a skin manifestation of Celiac. I also have a great deal of intestinal damage from Celiac, malabsorption issues and a whole host of difficulties because of that. I can sympathize about the rash...I thought I had poison Ivy...except that it didn't go away, and really it didn't look or act like poison Ivy. I hadn't had a diagnosis for months after that started.

The diagnosis would give you peace of mind as far as having answers as to what is going on, as well as motivation for being on a lifetime diet. If you read all you can about Celiac, you'll realize that the ramifications of NOT doing the diet can be devastating. Many of us have had years of illnesses without knowing why, and great relief knowing that we can overcome those, and avoid possible problems in the future. I would urge you to get tested, including a biopsy through endoscopy. If you truly can't do that (or have a Dr. who refuses....then you need a new Dr. in my opinion), then it wouldn't hurt to go Gluten Free to see if you have improvement (keep in mind that some people improve fairly quickly, and some take months).

If you have the DH rash...only a gluten free diet will cause it to go away. You also may need to avoid iodine and anti-inflammatories as they can exacerbate the rash. There are medications that can give you some relief (that's relief, not cure), but I'm one of those people who are very leery of things like that which can cause more problems than what they are relieving.

Good luck with your doctor...with healing and with your sanity. This whole process can be very frustrating and confusing...mostly because of the lack of information on our physicians part. Please keep us posted on your progress, don't hesitate to ask questions or just to vent.

[AliB]

I don't fully understand the insurance thing as I live in the UK and we have a different system, but from odd posts I have read it seems that some who are gluten intolerant don't want a definitive diagnosis as it may affect their premiums and could impact on any other insurance need in the future.

I may not be right on this one, but I am sure there are others out there who would clarify this better than me!

It is frustrating I know, but you have to try and psyche yourself up to believe that this is what you need to do in order to be healthy. Whilst annoying, it is not the end of the world.

Gluten is poison to those who are sensitive to it, in fact it is poison to most people, only they, unlike you, don't know it. They will continue to get sick whilst they unwittingly continue to stuff the stuff in their mouth and suffer for it. It is deceptively and insidiously damaging us all. It looks good, it smells wonderful and it tastes heavenly, but it is like Snow White's poisoned apple.

All the mucking and meddling about with it that Man has done has rendered it into a form that is bad for us. Yes it takes more effort on our part to create a gluten-free environment - but the more that realise the damage it is doing to them, the more the manufacturers will be forced to provide a bigger choice of gluten-free foods.

We've all been there. But it does get easier - honest!

[MDRB]

I'm so sorry that you have been so sick.

You certainly may have celiac disease. While it is inconvenient at first, eating gluten free will quickly become second nature. I can relate to the crying and feeling frustrated. The worst for me was when it I asked for a gluten free meal at a restaurant and was served the most bland, tasteless meal I had ever had, it was then that it hit me that this was a complete change in lifestyle and that it would be for the rest of my life, no more croissants, or thick slices of italian bread. I ended up crying in the restaurant (and getting a free meal because they thought it was the tasteless food that made me cry, lol)

I would probably ask your doctor some more questions about the insurance stuff. It could be that your insurance doesn't cover the endoscopy, but it might cover a skin biopsy to diagnose dermatitis herpetiformis, or perhaps he could diagnose you with only blood tests and an elimination diet.

Good luck, hang in there.