Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Feeling Frustrsted
0

8 posts in this topic

I went to the doctor yesterday, and the doctor laughted when I said that I thought I might have celiac diease. He said he rarely see celiac and when he does the people are rail thin with bloated stomachs( I'm 5'6 140lbs.) He said he thought my symptoms were just stress from my job(teacher) He did go ahead and do the blood tests, but he also said that it was just IBS and he gave me a prescription for Dicyclomine. My results come back on Friday. If they are negative what should I do? Should just keep eating normal and take these pills or should I get a second opinion?

0

Share this post


Link to post
Share on other sites


Ads by Google:

Ugh, I hate it that he laughed at you! How disrespectful!

FWIW, I'm 5'6", 150 lb, no bloated stomach, no diarrhea, no weight loss (I wish!), no cramps, no gas, zero nada zip!!! And I do have celiac disease! Not everyone is the same, your dr should know that. My family dr was actually really great, I asked to be screened cuz my sis has celiac disease, and she said no problem but I don't think you have it. Neither did I, but I was positive on labs and the biopsy confirmed it. I've been gluten-free for 3 weeks now.

What you do now is really up to you. If it comes back +, do you want a scope? If you do, may as well keep eating normally because you need to be eating gluten for the tests to come back accurately (do what I did, visit all your favourite spots and never walk past a bakery without going in, lol). If you don't think you will have a scope either way, just go onto the gluten-free diet and see if your body responds positively.

Wish I could tell you more! ((hugs))

0

Share this post


Link to post
Share on other sites
If they are negative what should I do? Should just keep eating normal and take these pills or should I get a second opinion?

If the results are negative... you could have a gluten sensitivity or intolerance, or you could have an intolerance to something else like casein (milk protein), lactose, soy, corn, ect. You could start out by eliminating dairy products and see what happens. If that doesn't work, than I would try gluten.

Persoanlly, I believe that IBS only occurs when the digestive track is agitated by something that the body cannot tolerate. I've been on two IBS meds. One was really bad and didn't work, actually it made me feel worse. And the other one worked for awhile and then stopped working. The last time my GI doc issued me IBS meds, I didn't get them.

0

Share this post


Link to post
Share on other sites
I went to the doctor yesterday, and the doctor laughted when I said that I thought I might have celiac diease.  He said he rarely see celiac and when he does the people are rail thin with bloated stomachs( I'm 5'6 140lbs.)  He said he thought my symptoms were just stress from my job(teacher)  He did go ahead and do the blood tests, but he also said that it was just IBS and he gave me a prescription for Dicyclomine.  My results come back on Friday. If they are negative what should I do?  Should just keep eating normal and take these pills or should I get a second opinion?

<{POST_SNAPBACK}>

Some doctors just do not have a clue! My doc, refered me to see a surgeon who told me that my Iorn levels were low because of my period,( my faratin level was 1.4) and refered me to see a OB doc who sent me back to the surgeon who placated me but after a year of prodding agreed to do the scope and of my gosh if it did not come back positive. Did i mention that he was soooo sure he would find nothing! Do not give up! If you have to find another Doctor, one that will listen and one that will do all the blood work needed and check it, sad to say but not all doc are forth comming. Good luck! ;)

Suzann

0

Share this post


Link to post
Share on other sites
I went to the doctor yesterday, and the doctor laughted when I said that I thought I might have celiac diease.  He said he rarely see celiac and when he does the people are rail thin with bloated stomachs( I'm 5'6 140lbs.)  He said he thought my symptoms were just stress from my job(teacher)  He did go ahead and do the blood tests, but he also said that it was just IBS and he gave me a prescription for Dicyclomine.  My results come back on Friday. If they are negative what should I do?  Should just keep eating normal and take these pills or should I get a second opinion?

<{POST_SNAPBACK}>

There is never anything wrong with a second opinion. Also many show up negative on blood work, I have never come back positive but both kids did. Good luck.

0

Share this post


Link to post
Share on other sites




I went to the doctor yesterday, and the doctor laughted when I said that I thought I might have celiac diease.  He said he rarely see celiac and when he does the people are rail thin with bloated stomachs( I'm 5'6 140lbs.)  He said he thought my symptoms were just stress from my job(teacher)  He did go ahead and do the blood tests, but he also said that it was just IBS and he gave me a prescription for Dicyclomine.  My results come back on Friday. If they are negative what should I do?  Should just keep eating normal and take these pills or should I get a second opinion?

<{POST_SNAPBACK}>

OH for Pete's sake!! Where is his professionalism?!? IBS is just a catch-all dx in my mind. It seems that there are more dx that correspond with pharmaceutical ads than anything else. If the results come back neg, it could be a false neg, but if the results are pos, then you have celiac disease. If they come back neg, you could always try the gluten-free diet on your own. If your symptoms lessen and you start to feel better, that most likely means you have celiac disease and the diet challenge is a legitimate diagnostic tool for celiac disease. (that's how my dr. found out I had celiac disease) Keep us posted.

0

Share this post


Link to post
Share on other sites
I went to the doctor yesterday, and the doctor laughted when I said that I thought I might have celiac diease.  He said he rarely see celiac and when he does the people are rail thin with bloated stomachs.

<{POST_SNAPBACK}>

Your doctor sounds just as bad as mine. You don't have to be rail thin w/ a bloated stomach to have celiac disease...you can be overweight or of normal weight and still have it. I DID fit that "classic" description however and no doctor I ever saw (and I saw lots) ever once mentioned celiac disease to me. They were just clueless. I didn't know I had a problem with gluten but I did know I had a problem with food in general. Whenever I told my doctor that food was making me sick and also causing depression and weight loss I was told to go see the psychiatrist. <_< I changed my diet on my own and my symptoms improved...when I pointed this out (still not aware of the gluten problem) I was told that I wasnt really better since there was nothing wrong to begin with...it was just the placebo effect of me "thinking" I was better. I was laughed at too but it doesnt matter cuz I'm getting better and I'll be the one laughing at them in the end. :D

0

Share this post


Link to post
Share on other sites

I don't have any faith in doctors when it comes to celiac disease. I was not rail thin I was obese and there are others here who are or were overweight. All the doctors wanted to do for me was write lots of prescriptions. Find another doctor and if that doesn't work you can always try the gluten-free diet anyway and if that makes you feel better then that may be all you need to know.

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,385
    • Total Posts
      920,613
  • Topics

  • Posts

    • Squirmingitch, I forgot to mention best of luck to you during the storm! I hope you are safe and that your home isn't impacted too badly! I'm on the coast in SC so we will see some storms from it but nothing near as bad as what you will have. Take care and good luck.
    • SquirmingItch, I really appreciate you gathering info for me! To answer your questions, yes, I'm on Dapsone now and have been on it for about 4.5 weeks. I have been gluten free for the same amount of time. I started on 50 mg of Dapsone which didn't seem to help much. I spoke to my doctor about it and after about a week she raised it to 100 mg. Since then I did notice a huge improvement in both my rash and itch. I no longer have any active rashes and my itching isn't completely gone but it's very minimal. I have been getting weekly blood tests done and will soon be moving to monthly.  My DH skin biopsy was done before the gluten free diet and Dapsone. My results for the skin biopsy came back as inconclusive, but even with those results, my doctor was convinced I had DH. I specifically asked her about the fact that she took the biopsy directly from the lesion rather than next to it and if that affects the result. Her explanation was that if it's a fresh enough lesion that isn't scratched, there should be IgA antibodies present. But she said that an inconclusive result isn't surprising because the IgA antibodies come and go from the skin so quickly that it can be very difficult to get a positive result, even in someone who is positive.  That's when she decided to run the celiac blood panel on me. And even though those results came back positive for the deamidated gliadin and negative for tTg, she still is very convinced that I have DH. I am happy that my doctor seems to be certain, but I would just feel better if the results were more definitive. The one other thing I am waiting on is I have been asked to attend grand rounds at the local academic hospital in 2 weeks. I guess grand rounds is where all of the academic dermatologists and dermatopathologists get together to review certain complicated cases. They will meet with me, review all of my pictures, biopsies and blood tests. My situation has been so complicated so they asked me to come. I am hoping maybe then I will get some more answers. 
    • It sure is, it really is. 
    • shellyb, I have info. for you & you may yet be able to get an official dx from your dermatologist as she sounds like she would be willing to learn. If you are dx'd with dh it is definitive & no other testing is needed. You don't need to see a GI. Im in FL & have had a long day watching Tropical Storm Hermine & making preparations for it's track which is over where I live. I'm tired! I will have links for you to reputable medical info. on the rash but it make take me till tomorrow or even longer if we lose power.  I'll be back as soon as I can. Question: You're on Dapsone now? How long have you been on it? How is it working for you? Are you getting the proper testing at regular intervals to make sure it isn't doing bad things to you? Were you gluten free before the skin biopsy?
    • Thank you so much for your quick response, GFinDC. While I wouldn't be completely opposed to another skin biopsy, I already had 4 done (3 were done prior to my dermatologist suspecting DH) so I don't love the idea of  yet another hole and scar on my body. Plus, fortunately I don't have any fresh lesions now, which I believe is needed for the biopsy. I wish I would have known to see a GI before going gluten free but I was so desperate to get any relief that I started that and Dapsone as soon as my doctor mentioned it to me.  My rash is definitely symmetrical and I have it in all of the "classic" DH spots although it basically spread over my entire body. As much as I'd like a more formal diagnosis, I really don't think I can go through all of that again. It was so bad that not only was I getting no sleep but I had to change my sheets every morning because there was blood all over them. Sorry, TMI. The worst part is that this all developed during my ninth month of pregnancy and got much worse after I delivered my baby. So not only was I dealing with this insanely itchy rash but I had a newborn and a toddler to take care of.  My daughters' pediatrician did mention doing DNA testing on me first and then my daughters to see if there's any concern that they may be susceptible. I may just go that route for now. I was just curious if others have had similar test results to mine and how did their doctors treat it? Thanks again!
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,455
    • Most Online
      1,763

    Newest Member
    JLeigh
    Joined