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Help And Advice Deperatley Needed!


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#1 Sam81

 
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Posted 20 July 2011 - 06:54 AM

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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#2 starrytrekchic

 
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Posted 20 July 2011 - 08:08 AM

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.
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#3 Sam81

 
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Posted 20 July 2011 - 12:50 PM

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...
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#4 glutenfreeinminnesota

 
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Posted 20 July 2011 - 01:44 PM

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!!!
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Diagnosed with Celiac Disease November 2009
2011:
Anemia is gone for the first time in my life, Yay!
Teeth are cleaner according to my dentist (interesting, eh???)
Eyesight has improved for the first time in my life (another interesting thing!)

**My advice to the newly diagnosed** HANG IN THERE!! It gets better and is so worth the seemly long road to getting better. Just be happy you can make yourself healthy with a diet change, and not have to take pills for the rest of your life. :D

#5 glutenfreeinminnesota

 
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Posted 20 July 2011 - 01:52 PM

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-e...celiac-disease/
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Diagnosed with Celiac Disease November 2009
2011:
Anemia is gone for the first time in my life, Yay!
Teeth are cleaner according to my dentist (interesting, eh???)
Eyesight has improved for the first time in my life (another interesting thing!)

**My advice to the newly diagnosed** HANG IN THERE!! It gets better and is so worth the seemly long road to getting better. Just be happy you can make yourself healthy with a diet change, and not have to take pills for the rest of your life. :D

#6 GFinDC

 
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Posted 20 July 2011 - 01:56 PM

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.
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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#7 Sam81

 
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Posted 20 July 2011 - 04:01 PM

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-e...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...
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#8 Sam81

 
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Posted 21 July 2011 - 12:12 PM

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??
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#9 kareng

 
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Posted 21 July 2011 - 12:26 PM

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
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#10 glutenfreeinminnesota

 
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Posted 21 July 2011 - 12:58 PM

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.
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Diagnosed with Celiac Disease November 2009
2011:
Anemia is gone for the first time in my life, Yay!
Teeth are cleaner according to my dentist (interesting, eh???)
Eyesight has improved for the first time in my life (another interesting thing!)

**My advice to the newly diagnosed** HANG IN THERE!! It gets better and is so worth the seemly long road to getting better. Just be happy you can make yourself healthy with a diet change, and not have to take pills for the rest of your life. :D

#11 Sam81

 
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Posted 21 July 2011 - 01:11 PM

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...
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#12 QuinnT

 
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Posted 26 July 2011 - 03:52 PM

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.
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#13 T.H.

 
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Posted 27 July 2011 - 04:49 PM

...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.
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#14 Sam81

 
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Posted 28 July 2011 - 01:29 AM

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.
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#15 Sam81

 
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Posted 28 July 2011 - 01:39 AM

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.
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