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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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    • marion wheaton
      Are Lindt chocolate balls gluten free?

      By marion wheaton · Posted

      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
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      Are Lindt chocolate balls gluten free?

      By trents · Posted

      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      Are Lindt chocolate balls gluten free?

      By BlessedinBoston · Posted

      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      My only proof

      By knitty kitty · Posted

      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
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