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Help And Advice Deperatley Needed!

Sam81

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Sam81 Apprentice
Sam81
Posted

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!

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starrytrekchic Apprentice
starrytrekchic
Posted

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.

Sam81 Apprentice
Sam81
Posted
  • Author

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...

glutenfreeinminnesota Contributor
glutenfreeinminnesota
Posted

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!!!

glutenfreeinminnesota Contributor
glutenfreeinminnesota
Posted

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?

Open Original Shared Link

GFinDC Veteran
GFinDC
Posted

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.

Sam81 Apprentice
Sam81
Posted
  • Author

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

Open Original Shared Link

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...

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Sam81 Apprentice
Sam81
Posted
  • Author

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??

kareng Grand Master
kareng
Posted

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

glutenfreeinminnesota Contributor
glutenfreeinminnesota
Posted

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.

Sam81 Apprentice
Sam81
Posted
  • Author

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...

QuinnT Newbie
QuinnT
Posted

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.

T.H. Community Regular
T.H.
Posted

...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.

Sam81 Apprentice
Sam81
Posted
  • Author

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.

Sam81 Apprentice
Sam81
Posted
  • Author

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.

ravenwoodglass Mentor
ravenwoodglass
Posted

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.

Sam81 Apprentice
Sam81
Posted
  • Author

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...

Sam81 Apprentice
Sam81
Posted
  • Author

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

T.H. Community Regular
T.H.
Posted

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.

Sam81 Apprentice
Sam81
Posted
  • Author

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!

Sam81 Apprentice
Sam81
Posted
  • Author

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!

T.H. Community Regular
T.H.
Posted

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? ;)

PadmeMaster Apprentice
PadmeMaster
Posted

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!

jcmi10236 Newbie
jcmi10236
Posted

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.

starrytrekchic Apprentice
starrytrekchic
Posted

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?

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    • catnapt
      how much gluten do I need to eat before blood tests?

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