Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Help And Advice Deperatley Needed!

Sam81

Recommended Posts

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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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...

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


  • 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...

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,398
    • Most Online (within 30 mins)
      7,748
    Megannnnn
    Newest Member
    Megannnnn
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • Scott Adams
      Coeliac UK Research Conference 2025

      By Scott Adams · Posted

      Thanks for sharing this!
    • Scott Adams
      Shingles - Could It Be Related to Gluten/ Celiac

      By Scott Adams · Posted

      I had the same thing happen to me at around your age, and to this day it's the most painful experience I've ever had. For me it was the right side of my head, above my ear, running from my nerves in my neck. For years before my outbreak I felt a tingling sensation shooting along the exact nerves that ended up exactly where the shingles blisters appeared. I highly recommend the two shot shingles vaccine as soon as your turn 50--I did this because I started to get the same tingling sensations in the same area, and after the vaccines I've never felt that again.  As you likely know, shingles is caused by chicken pox, which was once though of as one of those harmless childhood viruses that everyone should catch in the wild--little did they know that it can stay in your nervous system for your entire life, and cause major issues as you age.
    • trents
      Blood tests low iGA 4 years later digestive issues

      By trents · Posted

      Keep us posted.
    • Clear2me
      Gluten free nuts

      By Clear2me · Posted

      Thanks for the info. I recently moved to CA from Wyoming and in that western region the Costco and Sam's /Walmart Brands have many nuts and more products that are labeled gluten free. I was told it's because those products are packaged and processed  in different  plants. Some plants can be labeled  gluten free because the plant does not also package gluten products and they know that for example the trucks, containers equipment are not used to handle wheat, barely or Rye. The Walmart butter in the western region says gluten free but not here. Most of The Kirkland and Members Mark brands in CA say they are from Vietnam. That's not the case in Wyoming and Colorado. I've spoken to customer service at the stores here in California. They were not helpful. I check labels every time I go to the store. The stores where I am are a Sh*tshow. The Magalopoly grocery chain Vons/Safeway/Albertsons, etc. are the same. Fishers and Planters brands no longer say gluten free. It could be regional. There are nuts with sugar coatings and fruit and nut mixes at the big chains that are labeled gluten free but I don't want the fruit or sugar.  It's so difficult I am considering moving again. I thought it would be easier to find safe food in a more populated area. It's actually worse.  I was undiagnosed for most of my life but not because I didn't try to figure it out. So I have had all the complications possible. I don't have any spare organs left.  No a little gluten will hurt you. The autoimmune process continues to destroy your organs though you may not feel it. If you are getting a little all the time and as much as we try we probably all are and so the damage is happening. Now the FDA has pretty much abandoned celiacs. There are no requirements for labeling for common allergens on medications. All the generic drugs made outside the US are not regulated for common allergens and the FDA is taking the last gluten free porcine Thyroid med, NP Thyroid, off the market in 2026. I was being glutened by a generic levothyroxin. The insurance wouldn't pay for the gluten free brand any longer because the FDA took them all off their approved formulary. So now I am paying $147 out of pocket for NP Thyroid but shortly I will have no safe choice. Other people with allergies should be aware that these foreign generic pharmaceutical producers are using ground shellfish shell as pill coatings and anti-desicants. The FDA knows this but  now just waits for consumers to complain or die. The take over of Wholefoods by Amazon destroyed a very reliable source of good high quality food for people with allergies and for people who wanted good reliably organic food. Bezos thought  he could make a fortune off people who were paying alot for organic and allergen free food by substituting cheap brands from Thailand. He didn't understand who the customers were who were willing to pay more for that food and why. I went from spending hundreds to nothing because Bezo removed every single trusted brand that I was buying. Now they are closing Whole foods stores across the country. In CA, Mill Valley store (closed July 2025) and the National Blvd. store in West Los Angeles (closed October 2025). The Cupertino store will close.  In recent years I have learned to be careful and trust no one. I have been deleberately glutened in a restaurant that was my favorite (a new employee). The Chef owner was not in the kitchen that night. I've had  a metal scouring pad cut up over my food.The chain offered gluten free dishes but it only takes one crazy who thinks you're a problem as a food fadist. Good thing I always look. Good thing they didn't do that to food going to a child with a busy mom.  I give big tips and apologize for having to ask in restaurants but mental illness seem to be rampant. I've learn the hard way.          I don't buy any processed food that doesn't say gluten free.  I am a life long Catholic. I worked for the Church while at college. I don't go to Church anymore because the men at the top decided Jesus is gluten. The special hosts are gluten less not gluten free. No I can't drink wine after people with gluten in their mouth and a variety of deadly germs. I have been abandoned and excluded by my Church/Family.  Having nearly died several times, safe food is paramount. If your immune system collapses as mine did, you get sepsis. It can kill you very quickly. I spent 5 days unconscious and had to have my appendix and gall bladder removed because they were necrotic. I was 25. They didn't figure out I had celiac till I was 53. No one will take the time to tell you what can happen when your immune system gets overwhelmed from its constant fighting the gluten and just stops. It is miserable that our food is processed so carelessly. Our food in many aspects is not safe. And the merging of all the grocery chains has made it far worse. Its a disaster. Krogers also recently purchased Vitacost where I was getting the products I could no longer get at Whole Foods. Kroger is eliminating those products from Vitacost just a Bezos did from WF. I am looking for reliable and certified sources for nuts. I have lived the worst consequences of the disease and being exposed unknowingly and maliciously. Once I was diagnosed I learned way more than anyone should have to about the food industry.  I don't do gray areas. And now I dont eat out except very rarely.  I have not eaten fast food for 30 years before the celiac diagnosis. Gluten aside..... It's not food and it's not safe.  No one has got our backs. Sharing safe food sources is one thing we can do to try to be safe.        
    • Mmoc
      Blood tests low iGA 4 years later digestive issues

      By Mmoc · Posted

      Thank you kindly for your response. I have since gotten the other type of bloods done and am awaiting results. 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.