• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Help And Advice Deperatley Needed!
0

40 posts in this topic

Hi there, I am new and have been reading the forums. Here is my story/problem...

I was diagnosed at 16 with Bechets - very rare apparently for a white/british girl. I was put on Dapsone 50mg - 100mg daily + steroids if needed. I ave always suffered with what I've been told is IBS and bowel issues generally. Recently things have got worse. I am vegetarian and tried a diet (to lose weight) that was pretty much just fibre/gluten foods. in 4 months I lost 3 and a half stone, but still have a large belly. Now, most fibre/gluten foods I eat cause pain, wind, i'm always tired, I come out in a nasty rash on my buttocks that itches like nothing I have EVER felt within hours of eating certain foods and i am truly fed up with the nausea. I have recently been blood tested for Celiac and told they were normal results (whatever normal is) and have an appointment with dr tomorrow to discuss this further. Is it possible it's false result? and can anyone give me some good things to ask when I see him as I have a feeling he'll brush it off.

Im vegetarian and worried how I'll manage self diagnosis and cutting gluten out by myself! I feel I tick all the boxes for celiac. I haven't had dapsone for 18 mths due to pregnancy and breastfeeding and the dr's have suggested possible remission from bechets.

Any help/suggestions/advice is very greatly appreciated!

0

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


Well, my knowledge of Bechet's is based on the wiki article I just read, but it says gastrointestinal pain, nausea, diarrhea, and painful ulcerations around the genitals (which may be the rash?) are all symptoms. Could it be you're getting new symptoms of Bechet's since you're not on the medicine anymore?

You can have the skin around the rash biopsied to see if it is a celiac rash. I don't believe that's the normal location, though.

You might try going gluten light. Grains can be difficult on the digestive system. Focus on fruits, veggies, etc. I'm also vegetarian, and though my diet feels a bit limited at times, I'm making do well. Cooking a lot (soups, enchiladas, gluten-free baked stuff) helps with the restrictive diet.

0

Share this post


Link to post
Share on other sites

Well, my knowledge of Bechet's is based on the wiki article I just read, but it says gastrointestinal pain, nausea, diarrhea, and painful ulcerations around the genitals (which may be the rash?) are all symptoms. Could it be you're getting new symptoms of Bechet's since you're not on the medicine anymore?

You can have the skin around the rash biopsied to see if it is a celiac rash. I don't believe that's the normal location, though.

You might try going gluten light. Grains can be difficult on the digestive system. Focus on fruits, veggies, etc. I'm also vegetarian, and though my diet feels a bit limited at times, I'm making do well. Cooking a lot (soups, enchiladas, gluten-free baked stuff) helps with the restrictive diet.

Thanks, the rash is definitely not bechets, i suppose its possible its the bechets but thats not normally food related - im really struggling with tolerating foods that are either high in fibre or gluten...

0

Share this post


Link to post
Share on other sites

I would think if you are eating a lot of high fiber/gluten items, then the test result would come back positive. I never had the blood test....they went straight to an endoscopy with me, so I am not a pro at knowing the blood test stuff. I was told I had IBS also, and to go on a high fiber diet (TONS of wheat products...>:() for 2 months...I went back 2 months later and told them it made everything worse. When they got in there for the endoscopy, there was no question I had Celiac. If you have good insurance, maybe get a colonoscopy/endoscopy? At least you would know for sure...stress from wondering what's wrong could make things worse I would think. Hope this helps?? Hope they figure it out for you!!!

0

Share this post


Link to post
Share on other sites

I would think if you are eating a lot of high fiber/gluten items, then the test result would come back positive. I never had the blood test....they went straight to an endoscopy with me, so I am not a pro at knowing the blood test stuff. I was told I had IBS also, and to go on a high fiber diet (TONS of wheat products...>:() for 2 months...I went back 2 months later and told them it made everything worse. When they got in there for the endoscopy, there was no question I had Celiac. If you have good insurance, maybe get a colonoscopy/endoscopy? At least you would know for sure...stress from wondering what's wrong could make things worse I would think. Hope this helps?? Hope they figure it out for you!!!

Sorry to post AGAIN, but here's something I JUST read!! How weird is that? Made me think of this post....hope it helps?

http://www.patient-experience.com/index.php/overcoming-celiac-disease/

0

Share this post


Link to post
Share on other sites
Ads by Google:


There is a rash called dermatitis herpetiformis that is closely associated with celiac diseease. That rash (DH) causes blisters and the doctor can biopsy the skin near the blister to check for antibodies to gluten.

People with celiac disease have a higher than usual chance of getting other auto-immune diseases also.

1

Share this post


Link to post
Share on other sites

Sorry to post AGAIN, but here's something I JUST read!! How weird is that? Made me think of this post....hope it helps?

http://www.patient-experience.com/index.php/overcoming-celiac-disease/

Thanks for this link, I get the feeling this is how it'll be for me as that was similar to how it was for the bechets diagnosis, lots of negative results and in the end almost a process of elimination... It's a long tiring road... If I get no joy I will just have to try different things. Dairy/gluten/fibre see if anything works. Colonoscopy is scheduled for end of year...

0

Share this post


Link to post
Share on other sites




Apparently the celiac test results are not in and take 2-3 weeks. Regular bloods are all normal - no signs of anaemia, inflammation (chrones) etc. Colonoscopy brought forward to end of August. Can a colonoscopy confirm Celiac??

0

Share this post


Link to post
Share on other sites

Apparently the celiac test results are not in and take 2-3 weeks. Regular bloods are all normal - no signs of anaemia, inflammation (chrones) etc. Colonoscopy brought forward to end of August. Can a colonoscopy confirm Celiac??

Colonoscopy looks at the wrong end. You need an endoscopy with small bowel biopsies to diagnose Celiac

1

Share this post


Link to post
Share on other sites

Colonoscopy looks at the wrong end. You need an endoscopy with small bowel biopsies to diagnose Celiac

Yes, exactly. When I went in for my colonoscopy (which found nothing but my healthy colon ;)), they asked if I wanted an endoscopy also while they were at it, I said SURE! Why not? So glad I did or they wouldn't have found it.

1

Share this post


Link to post
Share on other sites




Yes, exactly. When I went in for my colonoscopy (which found nothing but my healthy colon ;)), they asked if I wanted an endoscopy also while they were at it, I said SURE! Why not? So glad I did or they wouldn't have found it.

Yes - I'll be asking for an endoscopy when I go in...

1

Share this post


Link to post
Share on other sites

Yes - I'll be asking for an endoscopy when I go in...

You'll want to ask for an upper GI endoscopy, or EGD (Esophagogastroduodenoscopy)

Endoscopy refers to all techniques using an endoscopy, including both upper GI tract and the colon/large intestine.

1

Share this post


Link to post
Share on other sites

...similar to how it was for the bechets diagnosis, lots of negative results and in the end almost a process of elimination...

Okay, I feel like this might need to be asked: what were the symptoms that led to their diagnosis of Bechets? Did they ever have a test that was definitely: this is Bechets! Or was it all elimination of OTHER conditions because they couldn't figure out what else it might be?

I only ask because a lot of the symptoms I'm reading about (I, too, didn't know much about this) can also be symptoms of celiac disease. So was wondering what exactly led them to suspect Bechets in your case, on the off chance it might be something else.

0

Share this post


Link to post
Share on other sites

Okay, I feel like this might need to be asked: what were the symptoms that led to their diagnosis of Bechets? Did they ever have a test that was definitely: this is Bechets! Or was it all elimination of OTHER conditions because they couldn't figure out what else it might be?

I only ask because a lot of the symptoms I'm reading about (I, too, didn't know much about this) can also be symptoms of celiac disease. So was wondering what exactly led them to suspect Bechets in your case, on the off chance it might be something else.

It was process of elimination. I had one episode of genital ulcerations. Lot's of mouth ulcers, tired/fatigue, my white blood cell count was low. I did have a rash that kept appearing on my legs but I have always been told it is NOT bechets related (never found what it is). I was put straight on Dapsone, and diagnosed with Bechets and IBS for the abdominal pain and bowel issues. I have just been to the Dr's who says my blood test for celiac is negative but won't give me the results. Last night I tried a new vege product and within hours had a rash on my elbows and knees (usually only get it on my buttocks). Dr is saying it is an allergy rash, not celiac - refusing to give me endoscopy as it costs extra. My concern is simple - is it possible that I have celiac and not Bechets and the dapsone has masked the symptoms of the celiac until now when I've come off it (2years) due to pregnancy and breastfeeding? Really fed up of no-one (Dr)listening.

0

Share this post


Link to post
Share on other sites

As a further point i wanted to add, in the last 4 days my stomach pain and nausea as reached new heights and the muscles in my back and legs have become sooooo sore they are untouchable. Dr doesn't think it's related - could it be?? I've managed to get a Colonoscopy at then end of August and a referral to a Dermatologist but that I think - is my lot.

0

Share this post


Link to post
Share on other sites

If the doctor doesn't think you have DH then why did they prescribe Dapsone? That med is for DH. DH is the skin form of celiac. The other symptoms you are describing do sound like symptoms that many of us get. If they refuse to do an endo on you then do go gluten free anyway and see if that helps. Some of us have to take things into our own hands unfortunately as doctors can be clueless. Also if you are in the US you have a legal right to copies of any tests that are done. Don't ask for them TELL them you want copies of the results.

0

Share this post


Link to post
Share on other sites

If the doctor doesn't think you have DH then why did they prescribe Dapsone? That med is for DH. DH is the skin form of celiac. The other symptoms you are describing do sound like symptoms that many of us get. If they refuse to do an endo on you then do go gluten free anyway and see if that helps. Some of us have to take things into our own hands unfortunately as doctors can be clueless. Also if you are in the US you have a legal right to copies of any tests that are done. Don't ask for them TELL them you want copies of the results.

They prescribed Dapsone for the Bechets - apparently it is also treatment for that. I've been on it for 12 years. I'm in the UK and apparently the Dr has to OK my request for my results and as he's being really annoying I doubt I'll get them. I think I've been mis diagnosed... But blood results are negative! Also bread doesn't set me off very much other than tummy pain - which is what he keeps telling me - if you can tolerate bread - you don't have celiac...

0

Share this post


Link to post
Share on other sites

Are there "types" of gluten? Wheat gluten? barley gluten? Is it possible barley gluten makes me re-act stronger than wheat gluten?

0

Share this post


Link to post
Share on other sites

My concern is simple - is it possible that I have celiac and not Bechets and the dapsone has masked the symptoms of the celiac until now when I've come off it (2years) due to pregnancy and breastfeeding?

Honestly, and this is only a guess by a complete layman, here: I'd say yeah. It's possible.

Do you NEED a diagnosis? Whether you are diagnosed or not, the treatment would be the same: stop eating gluten. Stop eating foods contaminated by gluten (cross-contamination). No diagnosis needed.

The reason I ask is that if they don't think it's celiac disease...you could just go on the diet yourself and see how it does for you. Although getting the drugs gluten free might be tricky. But many here on the board ended up doing that because they're in the same boat as you: no doctors will help, or test, or even LISTEN.

Lucky for celiacs that we don't NEED the doctors for any medication for our treatment. We can tell them to kiss our petutie and go check it out for ourselves. Some prefer a diagnosis, but we don't need it. And if everything improves on the diet, then you've got a good case. If nothing improves, you'll know that the diet likely isn't the issue.

And if you improve and they want you to make yourself sick all over again so they CAN test now? Well...they should have listened to you in the first place, right? They can go suck eggs.

Uh, yeah...bad doctor moment today. :rolleyes:

And as an aside: a colonoscopy won't diagnose celiac disease. They have to test the other end, in the upper intestines below the stomach. So IF they told you that the colonoscopy would help diagnose this, they're either trying to pass you off, or are showing their ignorance.

0

Share this post


Link to post
Share on other sites

I totally agree. I diagnosis would get me food on prescription which would help us financially and also help my family to accept I have it (this is the main reason) although I've gone down hill so quickly I tthink it may be sinking in. The rash I came out in yesterday has gotten worse since - covered in it now. My fault for eating shreddies!

0

Share this post


Link to post
Share on other sites

Ok so I have my test results in front of me, finally after much fighting - with the celiac result missing! In it's place he has put the word negative - his reading. He has tested me for Anti-tissue transglutnase - is this right or should there be more?? He has listed my full blood count but removed the celiac one. I am in the UK - if there are any UK sufferers/doctors that can help please do. It really feels like he's trying to keep info from me!

0

Share this post


Link to post
Share on other sites

There should have been more test results, yeah, if he did it right. The term 'anti-tissue transglutaminase' is actually not completely specific. There are two kinds that are usually tested in celiac blood panels: IgA and IgG. There's also the IgA Antiendomysial Antibodies test, AND you should have been given the Total Serum IgA test to make sure you are not deficient in IgA, because a certain percentage of Celiacs have this deficiency, and if they do, their tests come back falsely negative for celiac disease.

Re: the 'reacting to bread' comment. I DO react to bread (diagnosed with blood and biopsy). But I don't have any gut symptoms to it at all. No big D, no tummy pain even. Many doctors would tell me I don't react to it, as a result.

And jeesh, it very much does sound like he's trying to keep information from you. :blink: Is there any legal recourse to getting your results?

If he had to give the okay for you to get your test results...can you call the office, by chance, and mention that you need all the results that he gave the 'ok' for, but you'd like to drop by and get them because your copy is missing some parts and you can't read the complete results anymore (which is technically true, even if the problem with reading the results is because the doctor obscured them on purpose).

With so much obfuscation by the doctor re: the tests, personally I would be very concerned right now that you don't have a correct diagnosis. If he can't be open with you about your testing and trust YOU, how can you trust HIM?

Argh - Man, I think I would be going gluten free ASAP...or planning to let my dog poo on the doctor's front door step, LOL. At least it would make me feel better, eh? ;)

0

Share this post


Link to post
Share on other sites

That's awful that the doc would do that to you. I'd not even be returning to that doc after a stunt like that. (Although it's illegal here, as someone else noted. But still!).

I'm personally not diagnosed, but my recent issues with milk brought the issue up again. CAN you go to a different doctor? If so, you might want to. Sounds like this doc has other interests than your health.

The fact that he's *hiding* the levels suggests, to me, that it was actually positive and he's a jerk. He must just enjoy seeing you in pain or something. Go Gluten Free. It's hard at first, but it gets easier. And you'll enjoy the new foods. Mom got English Muffins the other day when we went shopping, and I like them! (I never really liked English Muffins before though). New foods that taste better and most (I've seen) are made with better ingredients, too!

0

Share this post


Link to post
Share on other sites

So you can have mouth sores from eating the gluten? I continually test neg but find that eliminating the gluten helps. I however have constipation worse since going gluten free. Ate some gluten yesterday and had mouth sores by bedtime. I have had them many times before but never put the two together until now. Very frustrated and tired. Lost a lot o weight and not sure how to put it back on.

Well, my knowledge of Bechet's is based on the wiki article I just read, but it says gastrointestinal pain, nausea, diarrhea, and painful ulcerations around the genitals (which may be the rash?) are all symptoms. Could it be you're getting new symptoms of Bechet's since you're not on the medicine anymore?

You can have the skin around the rash biopsied to see if it is a celiac rash. I don't believe that's the normal location, though.

You might try going gluten light. Grains can be difficult on the digestive system. Focus on fruits, veggies, etc. I'm also vegetarian, and though my diet feels a bit limited at times, I'm making do well. Cooking a lot (soups, enchiladas, gluten-free baked stuff) helps with the restrictive diet.

0

Share this post


Link to post
Share on other sites

Yes, mouth sores are one of the symptoms that can come up. There also seems to be an adjustment period bowel-wise in the months after, but that should even out. Maybe try some higher-fiber veggies?

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
      107,373
    • Total Posts
      935,737
  • Member Statistics

    • Total Members
      65,053
    • Most Online
      3,093

    Newest Member
    RichardNDL
    Joined
  • Popular Now

  • Topics

  • Posts

    • Hi.  I'm new to this!  Please help me get started. I want to try..I mean DO...a gluten free life so that, hopefully, my health issues will go away. So, please help me.
    • Hello. I apologize for this being long but I feel I should explain the situation so you better understand where I'm coming from. I am here because I do not have the time or money to be galavanting around to different doctors offices. I spent time doing that already, lost money out of my pay from not working but never found A SINGLE ANSWER.  I am a 23 year old female and back when I was about 13-14 I was diagnosed with Mononucleosis. Prior to this, I had been having other issues, or at least the minor problems I had previously considered as 'growing pains' since that's what my primary at the time attributed my pains to. Well now i'm 23 and it's only gone downhill since then. Back then I was told by a GI doctor who had done two or three EDG's and two colonoscopies that I have "the enzymes for crohn's and need to be careful." No other explanation other than eat 'gluten free'..... Now, this was kind of when it was the new 'health fad' for people, so being so young my logic was 'I'm young, I should be able to do what I want and eat what I want without worry!" so that's what i continued to do, despite feeling overall unwell. (I had really always felt unwell so it wasn't really that big of a deal for me)  Now that i'm older, i've literally experience an entire swath of issues. The only reason I am here is because I am now thinking back to that conversation with the GI Doctor that maybe she was right. While I do have insurance, I honestly don't really have the money to be shelling out for these tests all over again as I was lucky the first time around when my grandparents had taken me since I was underage.  My symptoms over the years and continuing have been: (in full, some may have nothing to do with the another)
      Lower back problems, feeling like sciatica but never confirmed. X-rays, MRIs, etc show nothing despite the intense pain. Drs now refuse to do more tests for 'nothing'. So I am left to handle feeling like an elephant is sitting on my lower back, right above my tailbone. (I did fall on that around 12 or 13 but doc never called back after testing, assumed i was fine...)
      Stomach cramping/spasm feelings
      On and off nausesa, any time of day.
      Inability to sleep. 
      Constant changes from hot to cold. (Original doctor has said over the years my temperature seems to run higher than normal. I almost always feel feverish even if only slightly.)
      Headaches/migraines
      Fatigue
      Lightheadedness at times
      Restless legs (DRIVES. ME. INSANE. The muscle relaxers i've been given just made it 1000000x worse! I was so sleepy but couldn't fall asleep due to the restlessness.)
      On and off diarrhea / constipation (I don't know what a 'normal' bowel movement is)
      Costochondritis that has come and gone since I was in 4th grade. (I remember the day because it was April Fools day and everybody thought I was faking the serious pain I was in. I could barely breathe, it felt like my tendons/muscles were being torn apart on the inside) .  I believe this is what my original DR thought was 'growing pains', except they never stopped even after I was finished growing..
      I used to get sick very easily - for about two years it seemed to clear up then i started getting infections non-stop.
      There are some .... embarrassing things... Such as despite how many times I clean myself I feel like i'm.... leaking.......... 
      Sharp/ache like pains everywhere in my body.
      There are likely many other things that I'm just so used to I'm not listing because I'm not sure if they're even related.



      I am just so tired of feeling like dog crap. I've never felt 100%, ever. For as long as I can remember i've always had issues but I come from a family that kind of just.... deals with their problems and not complain 24/7. After years of that, I need help. I am absolutely fed up not being able to do things because I just feel generally crappy. It's seriously depressing and making my depression and anxiety worse. Is testing for a second time worth it? If it is, what tests should I really be focusing on to figure out if this is my problem?
    • Thanks for the responses raven and cyclinglady!  I guess we just have to wait.  Is it wrong that I want there to be no question that its celiac?  She has had so many symptoms for awhile now--seemingly increasing--but I want there to be no question in her mind that she needs to be gluten-free--you know? For now we are working on eating gluten-free but I haven't really tackled the whole cross-contamination thing yet and looking into my freezer, fridge and pantry I have a decent amount of gluten that the rest of us will eat.  Then I guess I'll decide how gluten-free the rest of us should be. On a side note--the gi ran a bunch of tests prior to the biopsy--I haven't seen the results--but they mentioned over the phone that her white blood cells were high--maybe due to celiac?    
    • https://okinawahai.com/tips-for-eating-gluten-free-in-okinawa/ Hope this helps!
    • Sorry you're feeling poorly Have you seen this page: https://www.peoplespharmacy.com/2015/07/27/getting-off-ppis-can-be-a-challenge/ I think you can get gluten free DGL, maybe worth a try?
  • Upcoming Events