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
      104,095
    • Total Posts
      920,333
  • Topics

  • Posts

    • Hello Everyone, This is my first post here and I am writing to seek help from experienced people here. I have been suffering for over 4 years now and still no where close to having a solution/ satisfactory diagnosis of my problem. My problems started in Mar 2012 with sudden diarrhea which would not go away for days. At first, I was given general antibiotics medication which would help bring down the frequency for some days and then it would come back. Since then it has been going on. I am giving a time line and the series of tests and procedures I have gone through. Would like opinion from experienced and experts here. I can send the scans and reports if required. Would really appreciate the help. Male, Indian origin Mar 2012 - onset of symptoms - multiple bouts diarrhea - spaced 3-4 weeks, bloating, weight loss (to start with I was 74 Kgs), GP managed with antibitocs and loperamide for months Dec 2012 - consulted a GI doc towards end of 2012, Colonoscopy done - conclusion was "IBS" - was advised to manage stress. use Rifaximin and immodium Jan 2013 - Aug 2013 kept moderately fine for 3-4 months ..again started getting frequent diarrhea + weight loss (was around 70 Kgs) Oct 2013 - Consulted another doc, MD - stool and blood test - Ecoli and high Eosinophil Count, medication done for 5-6 months, montinored eosinophil from nov - Mar: always kept high.. came down but then again shot up in a month Mar 2014 - Consulted another GI expert - Endoscopy and duodenal biopsy done - H Pylori and Unremarkable Villious pattern, (weight 68 Kgs) - On and Off diarrhea continued. Given: Ivermectin July 2014 - again same doc - Blood test done: High Eosinophil count,  Colonoscopy and Ileum biopsy - preserved villous architecture, features of eosinophilic enteritis; Endoscopy  + duodenal biospy again - numerous H pylori bacteria, Preserved villous crypt ratio, features of eosinophilic enteritis > conclusion: I have eosinophilic enteritis. Started on Prednisolone (steroids) Aug 2014 - 3-4 days of severe diarrhea> weight came down to 65 Kgs. Hospitalised for 3 days - continued on Prednisolonerios Sep 2014 - After 10 days only again a serious bout of diarrhea - hospitalized again - put on IV fluid for 8 days - weight 59 Kgs. Colonoscopy + biopsy done: features of superimposed c. difficile colitis, non-specific mild colitis > c. difficle test came out negative. CT Enterolysis +Scan done: mesenteric lymphadenopathy > nothing wrong acc to docs. IgA deficiency found - diagnosed Celiac - advised for Gluten free diet.   Sep 14 - May 16: continued gluten-free diet, gained weight upto 63 Kg in Jan 16, but then started losing again and came to 59 Kgs in May. No signficant diarrhea. Minor issues. June 16 onwards: Again diarrhea started, still on gluten-free diet, weight lost - 54 Kgs now. hospitalised again under same GI doc - blood test - eosinophil high, CT Enterolysis done: Showing mucosal thickening in Jejunum and Ileum; Enteroscopy (going in jejunum) + jejunal biopsy - jejunal erosions + villous blunting, marked atrophic with V:C ratio of 0.5: 1 to 0:1. HttG blood test done - Came out negative> Conclusion : No gluten exposure (how?) + Refractory Celiac disease. June - July - have been suffering from continuous diarrhea (goes off for 5-6 days and comes back, bloating, trappings in abdomen - waiting for I don't know what. On Rifaximin + Ivermectin + Codeine Sulphate (for diarrhea) I am very depressed and have no clarity on what's going on. If it is celiac, why am I not doing better on gluten-free diet. If the villous damage is still there in small intestine, then why did I kept fine for Sep - May period? HTTG - negative now but was NOT taken in Sep when I was first diagnosed with celiac. Can we trust negative HTTG now and conclude that it has come down? I am 20 kgs down from my ideal weight and still going down. Have no clue what NOT to eat to stop this. Why is eosinophil always high. Can any of you expert help me to put my case to docs in other countries? With lots of hope, Alok          
    • So, I know I'm obsessing but...... University of Chicago Celiac Disease Center website says any total IgA result over 20 won't affect the celiac test.   If this is so,  I'm still confused as to what a weak positive ttg iga means even though her result was barely in this category.  Why bother having a weak positive anyway?   I just don't get it and our doc is on vacation so I won't know what he'll recommend for another week.  I'll be finding out this week if we can see a GI without a referral. Our lyme doc (she's had lyme, may still have it, like I said it's a long story) is having her do an IgG wheat test but I don't think that has any bearing on celiac does it?    
    • Hi!  I've had good luck at the Minnesota state fair because most food booths are only doing one thing so there is no cross-contamination. For example: french fries or chocolate covered bacon or Indian kebabs.   But I live in California and I am heading to the state fair today! Does anybody have any great food suggestions that are definitely gluten-free there? Thanks, Celiac C.
    • Hi.  I have been reading your post and thinking about how my pain was around diagnosis.  It was above the belly button, I think where you are describing.  At the time I assumed I had a stomach ulcer.   I had been taking Neurofen for an ear problem and assumed it was the NSAID that had caused my stomach ulcer (which I actually didn't have, when I had an endoscopy a few weeks later my stomach was looking great! My small intestine was not!).   Going back to the pain, it was a burning feeling.   My doctor prescribed Omeprazole but it didn't touch it.   In fact I ended up with bad D. which eventually lead to me having all the tests for Celiac Disease.   I still get that pain if I eat oats (pure oats) that are supposed to be OK for most Celiacs.     I get various pains in different places in my digestive tract from time to time, but that burning pain is something I won't forget. The other thing I had that you mention was that pain between the shoulder blades.  I had that - I felt almost like someone was pushing my shoulders down.  So odd. I get palpitations when I am anemic.    I hope you get some answers soon.  It is pretty tough having to keep going from one doctor to another, but sometimes it is the only way.   
    • I sit in an ice bath after a long training (running or riding).  It speeds my recovery, I swear!  
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,132
    • Most Online
      1,763

    Newest Member
    Feralgurl
    Joined