Worth Getting Diagnosed?

[Brrrandy]

I've been gluten free for about six months a for the most part I've felt great. Lately, though, I've been in the process of moving coasts and moving into a new apartment, so I've been staying with friends, my parents, and eating out. It seems i've been "glutened"-- I've broken out into small itchy bumps after eating, headaches and muscle and neck pain, tiredness, had major stomach upset, constant burping and acid reflux, felt nauseous constantly to the point that I almost never want to eat and dread it.

It seems pretty clear to me that the problem comes from gluten. But now I'm so sick that I'm having doubts and worry that maybe I have something else going on and should go through the process of diagnosis with a gastro doctor.

My question is... Is it worth getting diagnosed? It might make me feel better to know, and i might take contamination issues more seriously if i had a diagnosis. but I've heard you can be denied insurance, etc. Also, I'm scared of what I might have to do-- will I have to eat gluten again to get a positive diagnosis? I don't know if I could put myself through that.

I made an appointment with u of Chicago gastro people, but will it just be a waste of time and money to go in if they can't test me because I've been gluten free?

Thanks in advance for your advice! So happy to find a place for support.

[shadowicewolf]

Yes, it would give you peace of mind. It would also give you an 'official' excuse not to eat some things (joking of course).

But, i've heard you have to eat some sort of gluten before being tested. I don't know if this is true or not but i wouldn't want to.

[mushroom]

Yes, the testing after a gluten free period of six months would be pretty much a waste of time and money. You need to be eating a full gluten diet (equivalent to 3 to 4 slices of bread a day) for two to three months for the testing to be valid. In the absence of glulten the antibodies retreat from the bloodstream and your small intestine begins the healing process (foruntately for us, it does do that ) so the damage would probably no longer be sufficient to get a positive diagnosis.

It is normal when you resume eating gluten after being gluten free that you will feel worse than you did when your body was getting a steady dose of gluten and was more adjusted to dealing with it. That's why very few people make it through the full 2-3 months of a gluten challenge in order to get tested - it is just too painful.

On the other hand, if your rash turns out to be dermatitis herpetiformis, which is the skin form of celiac, it can be biopsied by a dermatologist by taking a sample of the skin immediately adjacent to an active lesion and examining it for celiac (your have to specify because they have to do a special staining). A positive DH biopsy is an automatic diagnosis of celiac disease. If you can bear to eat enough gluten to get an active lesion going for the derm. at the time of an appt. you may be able to get a diagnosis quite easily (if it is DH, that is). Do these itchy bumps form little blister heads? Do they leave scars when they heal. Because some types of DH do.

On the other hand, there is some value to not having the diagnosis when it comes to health and life insurance. It is all up to you whether you feel you can stick to the diet through thick and thin without the diagnosis (and through moves from coast to coast ) or whether you need that piece of paper to give you the motivation.

[Brrrandy]

Thanks so much! That's very helpful.

When I think of lesions I think of open wounds, do you mean to use it in that sense or in the broader sense? The bumps I've gotten have been tiny raised bumps, and almost look like a whitehead pimple, but watery instead of white, and smaller, all over my chest and stomach and back-- but they haven't blistered. But I also haven't even very much gluten. I'm wondering how severe it would need to be.

[koolkat222]

I wouldn't eat gluten again just to get an "official" diagnosis. To me, it's just not worth it. I know that even a tiny amount of gluten does me in. I can't stand the thought of willingly ingesting any gluten.

[ravenwoodglass]

Thanks so much! That's very helpful.

When I think of lesions I think of open wounds, do you mean to use it in that sense or in the broader sense? The bumps I've gotten have been tiny raised bumps, and almost look like a whitehead pimple, but watery instead of white, and smaller, all over my chest and stomach and back-- but they haven't blistered. But I also haven't even very much gluten. I'm wondering how severe it would need to be.

If the little bumps have a watery fluid in them they are blisters. Do they itch badly? DH usually itches and when the lesions heal they leave a purply scar that can take a long time to fade.

[Jenniferxgfx]

Hi there, I came here wondering if it was worth getting tested as well. I have a gastro appt next month but I'm ready to give up gluten right now. I'm trying to keep eating for the sake of accurate testing, but I sorta think testing is moot because I want to give up gluten regardless of their results just to be certain.

I'm not sure what the importance of testing is, except maybe to make sure it's in my medical record because I've been doubted by doctors a LOT and it will be safer in case I can't advocate for myself.

I don't intend on having children, so I don't need to know about passing on my illness, and I find medical testing a little too traumatic. Is it really that important to get tested?

[mushroom]

Hi Jennifer, and welcome.

There are two different ways to look at testing. One is the way that doctors look at it, and many patients too. The other way of looking at it is just for those who want to feel better.

Doctors want their scientific proof, so that they can put a label on you. And you can't have a label without evidence to back it up. Therefore, even if you have a positive blood test you have to have the endoscopy with biopsy too, because that is the "gold standard" of testing for celiac disease and confirms the diagnosis that (to them) is suggested by the positive blood test. They will then give you the piece of paper that says you have celiac disease. And some patients also need this piece of paper that validates their symptoms and the suffering they have been through. Everyone then says, x patient has celiac disease and must eat gluten free. If the patient doubts the need, they have the piece of paper. If the family doubts the need, the patient can produce the piece of paper. If the school doubts the need that little Johnny has to be gluten free, the piece of paper comes in very handy.

There is a downside to the piece of paper, however. If a life or health insurance company sees that piece of pape or you have to answer a question that reveals you have that piece of paperr, they can use it against you. Not all do, but it does happen. So not everyone wants a diagnosis of celiac disease in their file.

Then you come to the folks who have suffered for years and been told they had fibromyalgia and IBS and "head" problems, who have given doctors every opportunity to diagnose them that anyone can possibly think of. Finally, they figure it out for themselves And they stop eating gluten. And they feel better. And they go to their doctor and say guess what, I have a problem with gluten. And their doctor tells them they have to start eating it again so they can be tested I mean, why didn't THEY think of this before And the patient says, no way I am I going back to gluten, I know what's wrong with me, and I don't need a piece of paper that tells me I shouldn't eat gluten, my body has already told me that.

Now some of us fall in the middle of this continuum. They know they shouldn't eat it, have no intention of eating it, but they want the piece of paper anyway. These people are faced with a conundrum which I have set forth above. And it is something that each person has to decide for him- or herself. I am one of those who diagnosed myself and would never go back to, or continue eating gluten just to be tested. I figure the doctors had their chance But how you feel is how you feel, and you have to make this decision for yourself alone. If you're afraid of not being able to advocate for yourself you could always get yourself a MedicAlert bracelet and I defy anyone to deny you this or to ignore it

So this is my take on testing. Others here may well have some other opinions to offer. The more the merrier.

[cahill]

Very well said Mushroom

Welcome Jennifer and Brrrandy

As you can tell by the previous post there are knowledgeable,caring ,and some what AMAZING people in these forums.

[kareng]

I made an appointment with u of Chicago gastro people, but will it just be a waste of time and money to go in if they can't test me because I've been gluten free?

Thanks in advance for your advice! So happy to find a place for support.

This is from the U of Chicago website:

Open Original Shared Link

Call us Monday through Friday, from 9 a.m. to 5 p.m. central standard time at (773) 702-7593 with your questions. Most calls will be answered immediately, by a live person. Messages will be returned within 48 hours.

It used to be email to ask questions and I got a response right away. CAll & tell them what is going on. From my experience with them, if the person answering doesn't know, they ask the head of the Celiac program.

[Jenniferxgfx]

Thanks so much mushroom.

This place is a wealth of information. I'm so glad it's here!