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Doctor Visit - GW Hospital

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I need to read the postings in this forum but I have to vent first. I did this to myself -- went and saw a gastro doc without doing all the research I should have done.

(Can we post doctor names?) Anyway, GW Hospital has been good for many things, but the gastro doctor did not understand celiac. He didn't ask me about gluten ataxia (I forgot to mention it) He told me there is no relationship between the intense rashes I've had SINCE going gluten free (come on, is he kidding me? I get an all over body rash that is exzema but with an intensity that I've never had and it's not connnected?) And the kicker was he told me that the concentration issues that have been steadily improving are not related to the celiac and if I had questions I should see a psychiatrist. His team also told me that acid reflux, chest tightness and constipation are not related to celiac. asthma (ok, this is my universe may not be true for others) kicks in for me whenever my body is under stress, and acid reflux -- I realize there are different issues happening, but it is one digestive system and he is a gastro doc...what is the relationship??? He also said all the celiac symptoms should have alleviated in 6 months...I don't believe that...I dont' even understand how that could be true. My body heals slowly on a good day, and from a major "illness"? He told me to see a rheumatologist, but I'm not going to..I'm going to give my body more time, take my vitamins, eat simple foods, etc. Then I'll see..

I think I get brushed off too because I "look" healthy.... it's back to non-traditional medicine (accupuncture) for me..

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Hey there!

I'm so sorry to hear what happened at your Gastro. appt. I actually have my Gastro. appt. this upcoming Tues. & am worried about running into the same thing. If I do run into an unknowledgable dr., I'm considering checking out the Celiac Clinic at UIC (Chicago). I'm not sure, but I think that I read on this site that they're having a screening open to the Public this October. This is actually my 1st posting. I'm new to all of this.--Came to the stark & disappointing realization that my symptoms may actually be either a gluten sensitivity or full-on Celiac around June 2010. Whatever the case may be, I've been feeling so much better & the 'brain fog' is a lot better since I've been Gluten-Free/Casein-Free since mid-March. I've also had really weird, bad rashes, & 2 GERD operations--fundoplications & hiatal hernia repair a few years ago. Hang in there, keep researching, and try to be really careful to stay away from gluten. Try to keep your spirits up & keep in mind that you are not alone.

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I'm so sorry you hit such an ignorant doctor. :angry:

Just as an example of his being just wrong? The most recent research on adult diagnosed celiacs say that only about 20% of us actually fully recover. The rest of us don't. So full recovery in 6 months? Uh, no, no, and no again. He sounds like he's either not up to date on the most recent research on celiac disease, or is a person who doesn't bother to listen to his patients and figure out what the problem is other than 'in their heads.'

I think SO many of us celiacs have had problems with the doctors telling us it's all in our heads that we're freaking sick of it. Any time a doctor tells me that now, especially without testing or asking more questions so that I know he's thinking of EVERY other possibility? I write him or her off as not good for my health. If they can't bother to really look at us, LISTEN to us, and help us figure out what is going on, how can we be safe with them and trust them to make ANY kind of informed diagnosis?

Argh, so, so frustrated on your behalf over here. I just went through this crap with an allergist, who also used the 'it's a coincidence all this is happening since going gluten free.' I finally found another doctor who listened, who asked questions, and who figured out that some of my allergies were actually this rather rare, funky condition that is fixable with physical therapy for the throat. :blink:

Unsafe and unhelped by one doctor, helped and safe with the other.

If you have any other option, oh I would so see what other doctor you can find. I truly hope that you can. Or at the very least maybe you can get some of the more recent research and bring that stuff in and educate your doctor a bit, grrr.

Good luck!!


T.H.

Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease

23 years with undiagnosed sulfite sensitivity

25 years with undiagnosed mast cell activation disorder (MCAD) 

 

Daughter: celiac and MCAD positive

Son: gluten intolerant
Father, brother: celiac positive

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You know what makes me mad? We still have to pay these buffoons! I think it's the only profession where they can ignore you, not listen to you, be rude to you, actually give advice that in no way correlates to you and in the end, still put their hand out. It's shameful! I don't know how most of them live with themselves.

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Thanks for all the replies - and TH thanks for sharing your experience. I suspect I'm in a similar predicament, that I have another thing going on that just needs to be identified.. IF only a doc would listen. I'm going to keep looking, after I take a break.

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