Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,862
    • Most Online (within 30 mins)
      7,748

    Aracely
    Newest Member
    Aracely
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.5k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      Villi damage is caused by celiac disease, which does not happen in NCGS, although some people with NCGS do have elevated antibody levels. Some people with NCGS who have the genes for celiac disease may end up developing celiac disease, so in some people NCGS may be a precursor to celiac disease, but more research needs to be done on NCGS. Both low iron and vitamin D are common symptoms of celiac disease. Also, regarding beer:  
    • Scott Adams
      It’s true that some vaccines contain small amounts of preservatives, stabilizers, or adjuvants to ensure their safety and effectiveness. For example: Thimerosal: A preservative that contains ethylmercury (not to be confused with methylmercury, which is toxic). Most routine vaccines no longer contain thimerosal, except for some flu vaccines in multi-dose vials. Aluminum: Used in very small amounts as an adjuvant to boost the immune response. The amount is far below levels considered harmful, but if you suspect an aluminum allergy, it’s worth discussing with your doctor. Sugar alcohols: These are sometimes used as stabilizers, but they are generally well-tolerated. If you have a known intolerance, you can ask about specific ingredients in each vaccine. Since you mentioned an intolerance to metals and jewelry, it’s a good idea to follow up with allergy testing, as you planned. This can help identify specific metals (e.g., nickel, aluminum) to avoid. Your doctor can then guide you on whether any vaccine ingredients might be a concern. Since the Mayo Clinic has already identified potential allergies, it might be helpful to consult an allergist or immunologist. They can review your medical history, perform tests, and provide personalized advice on vaccines and their ingredients. While it’s important to address your intolerances, it’s also worth considering the risks of not being vaccinated. Many vaccine-preventable diseases can have serious consequences, especially for those with underlying health conditions. 
    • knitty kitty
      @Manaan2, I was on Miralax for several months after I crushed three vertebrae and fractured my hip.  The compression fractures of my vertebrae affected the Vagus nerve that stimulates digestion and intestinal movement, peristalsis. Miralax just didn't relieve the constipation I was experiencing at all.  Nothing budged.  I tried Milk of Magnesia (magnesium oxide) which pulls water into the digestive tract, and found that rather harsh and dehydrating.   Bad idea. I was already taking thiamine in various forms, Benfotiamine, TTFD (tetrahydrofurfuryl  disulfude), Lipothiamine and Allithiamine.  Click on my name, then Activities in the pull down menu to get to my blog to learn more about my journey with thiamine.   Since we need more thiamine when we are physically ill and emotionally stressed, I decided to focus on TTFD,  Benfotiamine, and magnesium l-threonate.  Within a week of increasing my doses a bit, my constipation was gone.  It took several more months to heal the compressed nerve damage.  For pain, I take a combination of TTFD, Pyridoxine B 6, and  Cobalamine B12 which together have an analgesic effect.  I can't function with pharmaceutical pain killers, besides they cause constipation.   Mechanisms of action of vitamin B1 (thiamine), B6 (pyridoxine), and B12 (cobalamin) in pain: a narrative review https://pubmed.ncbi.nlm.nih.gov/35156556/ Yes, I did just stop the Miralax, but I wasn't on it as long as your daughter.  Yes, there's a difference between adults and children.  Yes, my circumstances were different than your daughter's, but thiamine deficiency does affect the nerves and the brain.  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function (which activates the Vagus nerve and controls digestion).   I recommend you visit Dr. Chandler Marrs' website, hormonesmatter.com.  Dr. Marrs worked with Dr. Derrick Longsdale, a pioneer in thiamine research, specifically with children and autism spectrum disorders.  She has been very helpful to me when I reached out to her.  She would be better able to guide you about your daughter's care. https://hormonesmatter.com/sibo-ibs-constipation-thiamine-deficiency/#google_vignette Do stay in touch, please.  You can start another thread or personal message me any time.  My heart goes out to you, your husband, and especially your daughter.   Namaste
    • Manaan2
      @knitty kitty  The information you've provided is invaluable!  I have a lot more homework to do before we make the official switch but you have significantly increased my hope that we can get her off Miralax (she started at 3 years old and is almost 8!).  This weekend my husband and I plan to solidify all the details for a start point, then adjust as we go along.  I realize that everyone's body is different, then there's also the fact that she's a child but just out of curiosity if you don't mind sharing and if you'd rather not, no problem at all-how long did you take Miralax before switching and when you switched, did you just completely stop the Miralax or was there a period where you did Miralax and the supplements?  I plan to research that piece this weekend but just curious what you did.  
    • BIg Nodge
      Scott, thanks so much for the thoughtful replies. My doctor did actually just re-order thyroid labs to see what is going on with my TPOs. I agree that will be interesting information.  I think I know the answer to this, but as far as the biopsy . . .. that would be quite conclusive as far as celiac goes, but a negative result would not rule out NCGS, correct? Does NCGS also cause damage to the lower intestine/leaky gut?  I appreciate the thought that I should be open-minded to other causes. I did not have dysautonomia on my radar, so I will look into that. From a quick scan at the potential symptoms it seems like almost anyone could convince themselves they have it, very broad! I can see why that is a tricky one to diagnose. I did also show low vitamin D, I'm in New England so that is somewhat common. I have a memory of low iron on some lab result as well but I can't find it, so I'll look into that. My cholesterol is high too, so working on that.  While the initial adjustment was tough, I have actually adapted fairly well to going gluten-free at home. The tough part for me is I love eating out and traveling, so that has been a challenge. I suppose if the answer ends up being NCGS then I could maintain a mostly gluten-free diet but also experiment with the occasional splurges. Snowboarding just doesn't feel right without a beer in the lodge . . ... cider is just not the same!  Thanks again.  
×
×
  • Create New...