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Why Is It So Hard To Get Diagnosed?

missybean

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missybean Apprentice
missybean
Posted

Hello everyone. I'm new to the site. I have been having health issues for a year and half and been to several doctors including rheumatologists, gastro's, allergists, ENT docs, dermatologists and GP's. I still really haven't gotten a firm diagnoses of celiac or anything else. The last appiontment I had with primary provider she thought I had a rash that liked like DH, she told me I had to go gluten free. She believed all the symtoms I have had have to all be related and it just makes since. She showed my pics of what DH looks like and mine doen't look like that at all, mine don't look like blisters they are peachy/pink dots all over my feet and hands and insides of my wrists and inbetween my fingers and generally you can't see them until I start cratching...but they leave this kind of hyperpigmentation where they were after they settle down. I have itching all over my body but especially the areas I mentioned, it kind of feels like I came into contact with stinging nettles. When I here people decribe DH it sounds really awful. I question if thats what I have because I don't feel like mines that bad...there are days where I feel like I'm going insane because the itch is so bad and I just cry but there are other days where there is nothing. Are there different degrees or severities of DH? Since going gluten free almost a month ago with-in a few days the rash got waybetter and my diarrhea went away....I still have itching on and off and somedays are worse then others so I don't know if I got glutened or if they are secoundary allergies to food. I have had rast testing and they said I'm allergic to no foods. I did find out I have a lot of enviromental allergies like differnt trees,grasses,molds, etc. I have had unexplained joint pain swelling,muscle weakness, hair loss, chronic hives for over a year in addition to new itchy rash( possibly DH ), was diagnosed with IBS after colonoscopy found nothing even though I had bloody mucosy diarrhea and bad stomach cramping. I thought for a while I had candidias albicans and did the candidia diet and with-in2 days 85% of my symptoms went away the hives went way down I stayed on the diet for months when I would stray away for a night my symptoms would come back with-in a few hours to a day with joint pain and usually hives. Well for those of you who no the candidia diet it is basically meat vegetables and eggs. So there was really no grains or bread. I finally put the connection together when I became pregnant and at 6 weeks along I got the dreaded morning sickness and all I could eat was bread and crackers then I started seeing my symptoms getting worse and I though maybe there is a gluten connection. When I don't eat it I feel better when I eat it I feel worse. I just had the 72 hour fat stool test for malabsorbtion because I'm 4 1/2 months pregnant and haven't gained weight yet and I had steatorrhea. The results came back that I was a 7. 2 to 7 range is normal and 8 means malabsortion. I was glad to hear that but I was gluten free for 3 weeks when I did the test and I'm wondering if because of that my health was starting to improve and now I don't have to worry about malabsorbtion anymore but It does make me worry about my baby a little wondering if it got everything it needed the first couple of months. The gastro says next step is endoscopy and I have to eat gluten for that. I just don't know if I want to put my body through that just to get a possibly diagnoses that may or may not happen. I question myself if I have a problem with gluten or if it is something else. I don't know I just know I feel way older than I am. I'm 31 and I feel like I'm 50 sometimes. By the way I have hypothyroidism discovered thyroid goiters while pregnant with first baby in 2007 and all symptoms came on after birth in 2007 and now pregnant with 2nd baby due in Feb 2010. Any advise would be helpful. Thanks

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nu-to-no-glu Apprentice
nu-to-no-glu
Posted

It sounds like you already know how to treat your symptoms. I know how disheartening it is to search for so long with no resolve. Sounds like you are on the right track! It's really a personal choice if you want to go through with the endoscopy and put gluten back into your diet. It may be useful to have a firm diagnosis in case those little ones start to develop symptoms. Also, did your allergist perform IgE blood tests for other food allergies? This can show intolerances that aren't as immediate. I've learned (through the very knowledgable people on this board) that celiacs/gluten intolerant people do in fact have many other food intolerances (milk, soy, etc.) I hope you get what you need...many on here are self diagnosed after struggling to get an accurate diagnosis for so long.

missybean Apprentice
missybean
Posted
  • Author
It sounds like you already know how to treat your symptoms. I know how disheartening it is to search for so long with no resolve. Sounds like you are on the right track! It's really a personal choice if you want to go through with the endoscopy and put gluten back into your diet. It may be useful to have a firm diagnosis in case those little ones start to develop symptoms. Also, did your allergist perform IgE blood tests for other food allergies? This can show intolerances that aren't as immediate. I've learned (through the very knowledgable people on this board) that celiacs/gluten intolerant people do in fact have many other food intolerances (milk, soy, etc.) I hope you get what you need...many on here are self diagnosed after struggling to get an accurate diagnosis for so long.

I haven't had the IgE tests yet. I just saw a naturopathic doctor a week ago and that was something she offered me. She said it cost around 129.00 and insurance doesn't cover that. I wasn't sure at the time because I figured I would just continue with the gluten free and see how it goes but the skin itching got worse again and so I'm wondering if there is something else going on. I think 129.00 isn't bad at all so I'm going to do it. Thanks so much for the encouragement! By the way the doctor took one look at my daughter and said it looked like she had allergies and I thought she was just speculating and I said what makes you say that.....she said she has allergic shiners.Since birth I thought it always looked like my daugher had slight black eyes. So I'm thinking milk might be a problem.

missybean Apprentice
missybean
Posted
  • Author
It sounds like you already know how to treat your symptoms. I know how disheartening it is to search for so long with no resolve. Sounds like you are on the right track! It's really a personal choice if you want to go through with the endoscopy and put gluten back into your diet. It may be useful to have a firm diagnosis in case those little ones start to develop symptoms. Also, did your allergist perform IgE blood tests for other food allergies? This can show intolerances that aren't as immediate. I've learned (through the very knowledgable people on this board) that celiacs/gluten intolerant people do in fact have many other food intolerances (milk, soy, etc.) I hope you get what he tyou need...many on here are self diagnosed after struggling to get an accurate diagnosis for so long.

I'm sorry I got IgG and IgE mixed up. I think the IgE is the RAST test and I had that done and everything came back negative. But ND told me that IgG will dedect more of a sensitivity and IgE is more for a servere allergy.

Ahorsesoul Enthusiast
Ahorsesoul
Posted

Just go gluten free to see how it goes. It's the best test available. You sure sound like you have the correct symptoms.

It's hard to get diagnosed because there is no drug company pushing pills for this disease. Sounds like your last doctor was very good.

When I had morning sickness I found a small piece of cooked steak did better than crackers. I know it sounds like it would make me worse but it really settled my tummy. Try different foods until you find one that works for you.

I had hives, red splotches, itchy scalp and funny rashes before I found out I was a celiac.

missybean Apprentice
missybean
Posted
  • Author

Just go gluten free to see how it goes. It's the best test available. You sure sound like you have the correct symptoms.

It's hard to get diagnosed because there is no drug company pushing pills for this disease. Sounds like your last doctor was very good.

When I had morning sickness I found a small piece of cooked steak did better than crackers. I know it sounds like it would make me worse but it really settled my tummy. Try different foods until you find one that works for you.

I had hives, red splotches, itchy scalp and funny rashes before I found out I was a celiac.

[/quote

How did you finally get a diagnoses and how long did it take?

Ahorsesoul Enthusiast
Ahorsesoul
Posted

I started asking doctors when I was in my early 20s. They said I had a nervous stomach, colitis, IBS or that I just needed to relax. Was on phenobarb and Valium for year for 'this problem'. No improvement with my symptoms but I was flying just fine. Finally when I was in my 40s I was talking to my skin allergist about my food problems. He thought I might have a problem with wheat. I even asked if he thought it was gluten but he said absolutely not, just wheat. So I went wheat-less. Some improvement but all heck broke loose the weekend I ate a loaf of 100 percent rye bread. I decided that doctor didn't know much.

I gave up on doctors. By this point I was also suffering from fibromyalgia and now in my 50s. I was seeing a very nice PA who had an open mind. She suggested I see a Dr who also was into nutrition. I spent $900 that was not covered by insurance on the first visit with this Dr. She ran some tests in the office-none of them blood tests (the kind that tests your muscle strength when you hold different substances-forgot what this is called. I thought it some voodoo. As a nurse I wasn't too confident in her methods). She told me she didn't think I was lactose intolerant but was a celiac. Told me to go completely gluten free, gave me handouts with menus, food lists and recipes to last a few weeks. She was correct. Once I was off gluten I was great, my lactose intolerance and skin issues went away. I now have a much more open mind to different testing not approved by my insurance company. A friend told me about her doctor that was treating fibromyalgia. I saw that doctor and was treated with Dr Teitelbaum's protocol (I recommend this if you have fibromyalgia).

I wouldn't tell anyone to go my route. I've been in nursing since 1974 so I knew something was not right and that the doctors were missing something (no internet to double check like now). Do your own research, then go on a completely gluten free diet for several months. Then spend one day eating all those foods you thought you couldn't live without. You'll know the results.

I went totally gluten free almost 3 years ago now. If I had known how good I would feel I would have done it 30 years ago. I wouldn't have some of the health problems I have now if I had know when I was young. No one should suffer with this disease just because the doctors have not had the education on this disease. If having a 'real' test result is important to you, find a doctor whose speciality is Celiac disease if you want the tests done properly. It does not matter how far you have to go to find one, or how much money it costs, your health and peace of mind is priceless.

There is no magic wand or pill. It does take hard work to get the gluten out of the diet. Now, I just don't see what's so hard about it because it's second nature. Meat and veggies, nothing processed. And this website is the best.

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heathen Apprentice
heathen
Posted

Celiac is so hard to diagnose because everyone's Celiac looks a little bit different. Some us have the GI symptoms, some of us have abnormal lab values, some of us have psych symptoms--and all of it looks like so many other diagnoses! Hope you get the help you need.

nora-n Rookie
nora-n
Posted

If you can get the DH diagnosed you do not need to get the celiac diagnosed since that is just as good. (DH is diagnosed during an outbreak but on healthy skin, not the actual rash)

One can get outbreaks for up to a year after going gluten-free, and for a while after getting glutened.

Do not go back on gluten during pregnancy, not good for baby.

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