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Help And Advice Deperatley Needed!

Sam81

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T.H. Community Regular
T.H.
Posted

You can also get the mouth sores if you have an allergy rather than celiac disease. If it's an allergy, however, I understand that the sores will tend to show up more in the areas where the food touched - this according to my dentist, not an allergist.

If it was an allergy, though, typically you'd get more on the roof of your mouth, your tongue, the back of your throat, and maybe the sides of your cheeks right in the middle where the food would touch as you chew it, you know?

I think sores in this instance are more likely to show up quickly, after contact, and not much later in the day. Not entirely sure, though, so figured I'd mentioned it.

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Sam81 Apprentice
Sam81
Posted
  • Author

Ok, I think things may be moving forward. Following a complaint I made regarding my results (still dont have them tho) my Dr has agreed to refer me to a GI Consultant (gastro intestinal?) but still seemed convinced they would not do an endoscopy. He agrees I may have been misdiagnosed with Bechets at 16 and has agreed it's possible the Dapsone I was given to treat Bechets may have helped and masked the Celiac until I stopped taking it 2 years ago. I have an appointment with a dermatologist in 4 weeks and im hoping they'll do a skin biopsy to confirm if the rash is celiac DH. It's very slow going over here but I am hopeful by xmas I may have some answers. I have a colonoscopy (regarding my so say IBS) in 1 week and if nothing sows up there I'll be referred to a dietician.

If by xmas nothing has changed I have made the decision to just go gluten free and see if it helps.

Does anyone have any advice or suggestions on things I should ask or make sure is done when I see the Dermatologist?? I need to make the most of this and get as much done as possible!

T.H. Community Regular
T.H.
Posted

The only thing I can think of is to look up exactly WHERE the biopsy needs to be taken from. As I recall, it shouldn't be taken from the rash itself, but from the skin surrounding the rash, or it won't test positive. I'd double check that for accuracy, but I have heard of those who had the biopsy taken from the wrong spot, so it seems like something to pay attention to, especially with all the crud you have been getting!

  • 2 weeks later...
Sam81 Apprentice
Sam81
Posted
  • Author

Just wanted to have a whinge as I'm fed up and preparing for my colonoscopy - seems pointless but have to follow dr's orders to get to the GI guys. Oh well...

Takala Enthusiast
Takala
Posted

Isn't it bizzarro this obsession the medical profession has with wanting look up everybody's bum, when the problem is somewhere else ?

Get a digital camera and start taking pictures of that rash right now, write down what you are eating in a diary daily, (ate "shreddies," now look like lobster on Aug 18, want to scratch myself with pitchfork) and make sure the dermatologist sees the photos and the food log dates.

Oh, and make sure you tell every doc you see you have the symptoms and rash of DH, make them take note of it.

Sam81 Apprentice
Sam81
Posted
  • Author

Isn't it bizzarro this obsession the medical profession has with wanting look up everybody's bum, when the problem is somewhere else ?

Get a digital camera and start taking pictures of that rash right now, write down what you are eating in a diary daily, (ate "shreddies," now look like lobster on Aug 18, want to scratch myself with pitchfork) and make sure the dermatologist sees the photos and the food log dates.

Oh, and make sure you tell every doc you see you have the symptoms and rash of DH, make them take note of it.

Fab advice, thank you. Have started keeping a diary but as I'm on this stupid diet for my colonoscopy on thursday it might not be that great. Im living off white bread, eggs, cheese and cornflakes!! Will continue the diary until I see dermatologist in mid september and GI in October!

Sam81 Apprentice
Sam81
Posted
  • Author

Well, colonoscopy done - and guess what - NORMAL, as expected. Had a polyp removed and some biopsies taken - just incase but they will now refer me to a dietician as they think it's IBS... I give up! The fact I only get symptoms and this bloody rash when I eat (pretty much anything and everything) seems to be irrelevant! I'm sure IBS doesn't flare with everything you eat?? 3 weeks to go to see the dermatologist and 6 weeks for the gastro intestinal people. Who knows, maybe by xmas I'll have an answer...

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  • 3 weeks later...
Twinklestars Contributor
Twinklestars
Posted

Hi, I've just been reading your thread and the run around you're getting from doctors is insane! I'm so sorry and I hope you're finally on the road to getting a definitive answer x

  • 4 weeks later...
Sam81 Apprentice
Sam81
Posted
  • Author

Update: Dermatology have incorrectly biopsied my rash (celiac DH) and also told me it is likely to be eczema or psoriasis - despite link to food - they can't answer that.

Gastro app today told me I have to go on low residue diet as it's IBS I am suffering with, not Celiac - it's all in my head. I am to remove fibre from my diet then drink fibogel (go figure). It's impossible to cure abdo pain, nausea and trapped wind as well as curing bowel issues - only one can be helped - I must decide which. He's refused to do endoscopy and will review in 4 months to change fibogel for something else if it hasn't helped.

I left in tears, very down and sad tonight. No-one seems bothered with the "Hives" I get on my legs which as far as i've researched looks likely to be caused by an allergy to food. Dr's are happy to say mouth and throat ulcers are bechets related even though I have no other symptoms and no-one seems bothered about the tingling/numbness in my hands, the migraines/headaches, fatigue, irritability, rash, weight gain (despite regular exercise and eating healthily).

Oh well...

:(

cyberprof Enthusiast
cyberprof
Posted

Update: Dermatology have incorrectly biopsied my rash (celiac DH) and also told me it is likely to be eczema or psoriasis - despite link to food - they can't answer that.

Gastro app today told me I have to go on low residue diet as it's IBS I am suffering with, not Celiac - it's all in my head. I am to remove fibre from my diet then drink fibogel (go figure). It's impossible to cure abdo pain, nausea and trapped wind as well as curing bowel issues - only one can be helped - I must decide which. He's refused to do endoscopy and will review in 4 months to change fibogel for something else if it hasn't helped.

I left in tears, very down and sad tonight. No-one seems bothered with the "Hives" I get on my legs which as far as i've researched looks likely to be caused by an allergy to food. Dr's are happy to say mouth and throat ulcers are bechets related even though I have no other symptoms and no-one seems bothered about the tingling/numbness in my hands, the migraines/headaches, fatigue, irritability, rash, weight gain (despite regular exercise and eating healthily).

Oh well...

:(

So, now that you've exhausted all the testing, it's time to give the gluten-free diet a chance, right?

Sam81 Apprentice
Sam81
Posted
  • Author

So, now that you've exhausted all the testing, it's time to give the gluten-free diet a chance, right?

I guess. I just feel lost, I don't know where to start, I'm vegetarian as well. I know my extended family won't support the decision and see me as just a pain in the arse. Things are different here and with no diagnosis = no help.

ravenwoodglass Mentor
ravenwoodglass
Posted

I guess. I just feel lost, I don't know where to start, I'm vegetarian as well. I know my extended family won't support the decision and see me as just a pain in the arse. Things are different here and with no diagnosis = no help.

Do get on the diet strictly as you have nothing to lose now but the pain. Sometimes we have to take our health into our own hands when the doctors fail us. If gluten is an issue your family will come around when they see how much better you are doing.

Sam81 Apprentice
Sam81
Posted
  • Author

Does anyone recommend those self testing kits? I think it's for me too - Dr's have really made me begin believing it is all in my head - stressed induced etc etc...

Regarding diet - where do I start in the UK? Where do I buy gluten-free food?? Is all gluten-free food wheat free as well or is that something else?? How long before I know if diet is working - should i allow a week, a month, a year... Such a massive thing!

ravenwoodglass Mentor
ravenwoodglass
Posted

Does anyone recommend those self testing kits? I think it's for me too - Dr's have really made me begin believing it is all in my head - stressed induced etc etc...

Regarding diet - where do I start in the UK? Where do I buy gluten-free food?? Is all gluten-free food wheat free as well or is that something else?? How long before I know if diet is working - should i allow a week, a month, a year... Such a massive thing!

Give it a good three months or so. Go with as much whole food as you can, meats, chicken, eggs, rice, potatos, veggies, beans, fruits are all gluten free in their natural state. Gluten free food is going to be food without wheat, rye, barley or oats. Here in the states we have gluten free food in both grocery and in health food stores. You may want to ask in the products section where to find the best stuff in the UK.

Sam81 Apprentice
Sam81
Posted
  • Author

Give it a good three months or so. Go with as much whole food as you can, meats, chicken, eggs, rice, potatos, veggies, beans, fruits are all gluten free in their natural state. Gluten free food is going to be food without wheat, rye, barley or oats. Here in the states we have gluten free food in both grocery and in health food stores. You may want to ask in the products section where to find the best stuff in the UK.

Thank you, that's very helpful. Meats are a no for me as I'm vege and all the vegetarian stuff is packed with wheat and gluten! I will spend this week planning and buying and as of 08.10.11 will be gluten free... Here goes...

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      Oats gluten free?

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      By Lori Lavell · Posted

      The body reacts to all grain proteins in all grains from my observation. Call it Gluten, Gliadin, which is what they test for commonly, however, I am Celiac and react with dermatitis herpetiformis to corn and the glutenous protein in it is called Zein. They only test for Gliadin. Testing needs to be updated in my opinion. It only take a small parts per million to continuously create systemic inflammation. This is not productive to healing and all grains contain some for gluten like substance. It's called Molecular Mimicry.
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      Oats gluten free?

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