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Don't Know What To Tell The Doctor....help Please?
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Hello,

I've been having stomach problems for awhile now and am seeing a GI specialist who didn't feel it was warranted to test me for celiac. Based on everything I'm reading, I disagree, but I wonder if maybe I left out some important details when discussing things with the doctor. He was very rushed and didn't give me much time, so I just discussed the worst of the symptoms:

-bad diarrhea and occasional constipation

-bloating and severe gas

-indigestion

-fatigue

I've had other problems as of late, such as severe headaches, hoarseness (especially when waking which I've never had before), muscle aches and others which I didn't think we're relevant to mention to the doctor. Also, I was reading about the skin condition associated with Celiac (so sorry I forgot it's name) and I realized that I have something like that as well. I always assumed they were just pimples, but I always thought it was strange that the bumps I get are almost always bilateral! And I never thought to mention that to the doctor.

Anyways, when I brought up celiac, he said that I would be thinner if I had it. I could be wrong, but I didn't think everyone with Celiac got really thin? I've lost about 15 pounds in the last month and a half without effort, but I'm still slightly overweight...however, I gained the weight a year and a half ago when I started the drug Paxil, so I've not always been this heavy.

Anyways, I went back to my regular doctor and said I really wanted the Celiac test done, and he's doing it even though the GI wouldn't...what does everyone here think? Is that a waste of time? Is there other things I should be telling the doctor?

Sorry this post was so long, I"m just very frustrated.

Thanks,

Kelly

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Hi Kelly,

If you have a rash that could be Dermatitis Herpetiformis, then you could try going to a dermatologist and ask them to biopsy the rash. They would look for IgA deposits in the skin.

I personally would mention all your symptoms to any doctor you can get to. Odds are that one of them might notice something the others missed.

I was told the same thing by one of my previous GI doctors, about the fact that I weighed too much to be Celiac. That is just not true. Weight gain can also be an symptom if Celiac in some people. And most people only lose weight when theyir intestines are damaged to the point that they are not absorbing much of anything at all.

Let us know what the test results say. I ended up doing the same thing, getting the blood test done by my primary doctor, since none of the GI's I went to would do them. I was unintentionally on a low gluten diet, and my bloodtest came back negative. I don't know if there just wasn't enough damage in my intestines to cause the antibodies to reach my blood, or if I wasn't producing very many antibodies due to the low gluten consumption, but I have such a severe reaction to gluten that I knew it was my problem. I ended up being tested by Enterolab. Positive for the main gene for Celiac and positive for the antibodies as well.

God bless,

Mariann

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The doctors never did recognize what was wrong with me. I had to do the research myself, much as you are doing. Finally, I found a GI doctor on this website who was experienced in celiac disease and I had him do the biopsy myself. I don't have insurance, so I paid the approximately $2500 myself on my credit card. I'm really glad I did, because I would have just gotten sicker and sicker and then had the cascade effect of all the other diseases that are able to come in on the coattails of undiagnosed celiac disease.

In my opinion, a doctor who is too rushed to give you the right amount of time or too know-it-all to listen is a bad investment. Much of the info available on celiac disease now is very new. Unless a doctor is really keeping up on the latest details, they probably wouldn't know what they needed to diagnose you. The thing about celiac disease is that you can have it and have very atypical symptoms, or no symptoms at all and still have it in there, doing the damage. The blatant symptoms come when all the damage is done. Trust yourself and keep going! Good luck!

Gerri

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My personal opinion is that you should tell your Dr about everyhting that seems not normal to you... I did the same thing. I have had so many problems, some severe and some exremely minor. When going in to my thyroid Dr, they wanted me to update the list of current or issues that I have had in the past. I thought some of the questions were ridiculous.... But as it turns out he is actually the one that ordered the tests. I will not 2nd guess those questionairs anymore. They may have saved me. I would also strongly suggest finding a Dr that you feel you have the time to tell him everything. I HATE FEELING RUSHED!!!!

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Before I was diagnosed I would write down any symptom on a piece of paper, then when I went to the dr I would take that paper with me. I also tried to monitor body temp.

Sometimes it is easy to get into the office and forget key things that you wanted to tell the dr about, so write it down!! It sure helped me.

-Jessica :rolleyes:

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    • I figured I would update those who were wondering.  I have gotten the appt. so far moved up to August 30. I am waiting to have gene testing done via swab for all 3 of my kiddos tomorrow. My daughters celiac antibodies came up negative but her IgA is low which the ped said could cause false negative antibodies for celiac so she will need to see a GI dr. also. The pediatrician is going to call the GI to try to get them in sooner. I am keeping them all on a gluten diet until the GI dr. decides what to do. I am on the cancellation list already for my son, however I am not going to be persistent with my phone calls to them until I have the results of the gene test. I really want that result in my hand before going to the GI dr if I can. Maybe if he is positive, along with his bloodwork and my history they can forgo the endoscopy. But he will eat gluten till then.  My husband and I have been very honest and upfront with him as to what is going on and the possibility of the endoscopy and what that entails and although scared in general he seems ok after assuring him that since I have it he has me to help him every step of the way.  Going through his current diet with him I realized that he is truly on such a low gluten diet that I am actually surprised his bloodwork shows antibodies at all!  So I told him to make a list of allllll the gluten he could possibly think of eating and he needs to pound it until the GI visit or endoscopy. Funny thing is everything he keeps thinking of to want to eat...is already gluten free!  The other night we were at a friends and he asked if he could be done with his hotdog. I made him finish just the bread 😂 Thanks for your help and advise and I will keep y'all posted on both kids!  My oldest is a ok as far as all his antibodies. Just actually had a follow up for other immune issues and all his levels are now normal!
    • I like your plan Cara, I may have to include it in my sons.    Poor little guy is still very very sick. I think he is resisting and cheating, despite having the support of two other siblings and a 100% gluten-free home. 
    • Despite it being a nightmare, I did wait for my kids to get biopsies. At one point I had one severely ill child gluten-free and two more waiting having to eat it. It was worth the wait though and I think long term a biopsy may be worthwhile, especially for school. I have already had issues with schools and camps so having a firm diagnosis has been helpful. 
    • Knowing that the reaction to gluten in celiacs is an uncalled for immune system reaction, I was thinking of how a cure would be possible. Maybe a medicine that somehow turns off the immune system. The only thing that i've heard do that... HIV.  obviously that's way worse than celiac. Just some food for thought.
    • Well, you can probably get an apple or something.  You might be able to get someone to boil you some eggs.  But be careful of things like nuts that should be naturally gluten free.  They have almost always been soaked in a flavor solution that usually containes caramel coloring, "soy" (wheat) sauce and other aditives.  If I am really hungry and must eat in a Chinese restaurant, I order plain white rice and steamed vegetables.  But even so, you must monitor it carefully.  The rice sometimes has other substances added to give it a better texture, and very often the vegetables have in fact had "just a little bit" of soy sauce added.  To be fair, celiac disease is hardly ever found in East Asians, so understandably people are not tuned it to it.  Also, culturally, with the exception of fruits, it is generally thought that the flavor of foods needs to be enhanced, so it is had to find anything natural even in the "western" gorceries. Even in the western restaurants, be careful.  Fish and meat and often vegetables are usually pre-marinated. I will not even attempt to address the issue of cross-comtamination, since that is a whole higher order of things. I do know what I am talking about; I have celiac and have worked here for nearly 7 years.  
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