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

Disapointed...


Bigbread

Recommended Posts

Bigbread Rookie

Damn, I


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



Celiac.com Sponsor (A8-M):



mushroom Proficient

I am sorry you didn't get the definitive answer you wanted :( So many of us don't. But hey, if the gluten free diet makes you recover, then isn't that an answer in itself?? :) And whoever told you you could eat rye ought to be shot because the gluten in rye is the same as the gluten in wheat, as is the gluten in barley. Some celiacs tolerate certified gluten free oats; some do not.

If you have itching and burning and red patches that scar when they heal, that really does sound suspiciously like dermatitis herpetiformis, which is the skin form of celiac disease. People with DH will often test negative on the blood tests. The way to test for dermatitis herpetiformis is to find a dermatologist who is familiar with it, and who will take a biopsy adjacent to (not ON) the lesion, because the antibodies will be found in the adjacent tissue. A diagnosis of DH is a diagnosis of celiac. What have your doctors said about these red patches that scar? Do they have little blisters in them? Has anyone given you a diagnosis of what they are? Maybe that should be explored - it could give you your definitive answer.

Dixiebell Contributor

Hi Bigbread. Have you been to a derm. for a biopsy of that rash? Sounds like you could possibly have DH. If you have DH then you have celiac. If you can get a biopsy, they need to do it beside the break out not the break out itself.

Bigbread Rookie

Thanks for the posts.

My skin has been diagnosed with acne. It doesn't matter what my skin looks like Dermatologists(are the worst- been to 6) say all forms of skin problems are acne and food does not cause skin problems. Expect Exzema should not drink milk. They even refuse tests and wont' listen to other symptoms. Even when I got a bad reaction to homeopathic meds that caused my skin to scar I was told its acne. I honestly dont think they know what to do if the 3 acne meds dont work. Which I can tell you it doesn't on me.

The worst part is honelty the part where they dismiss me as if I'm a todler then I know they have no idea what they are looking at. I've been to 25 docters in total. So I am really tired. If this doesnt work I don't know what will.

mushroom Proficient

I know what you mean about dermatologists, they suck - I won't go back to mine; I hate that woman! She told me not to stop a medication I was taking for my RA even though it was making my psoriasis so much worse. Ha, what did she care? It was no skin off her nose, only mine :blink::lol:

Seriously, though, will no one take you seriously? Do you have someone who could go to the appointment with you and be an advocate for you, and not allow the doctor to be so dismissive? It is so ridiculous so say that food does not cause skin problems; almost all my skin problems (except the cancers :o ) have been caused by food. What a bunch of bunk. I think doctors become dermatologists because they aren't bright enough to be anything else :rolleyes: Okay, end of dermatologist rant.

Skylark Collaborator

If you go off gluten and all your problems go away, that will have to be a "diagnosis". Actually what you describe could be more allergic than celiac and the definitive test for allergies is elimination and challenge. Try the diet and see what happens. good luck!

cassP Contributor

i had Excema on my foot for 5 years- it itched so bad i would scratch till it bled.. it was horrific. it went away when i took wheat out of my diet a decade ago... not milk.

your diet can most definitely affect your skin. i hope you find the answers you want and feel better :)


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



Celiac.com Sponsor (A8-M):



tarni Rookie

Hi Bigbread, yes Damn indeed! I

Monklady123 Collaborator

Yep, just go gluten-free and if you feel better then that's your "diagnosis". I've opted not to have the endoscopy because I don't want to go through several months of eating gluten every day. For me it's simple -- if I eat gluten I feel awful, if I don't then I feel good.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,544
    • Most Online (within 30 mins)
      7,748

    Jem68
    Newest Member
    Jem68
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Beverage
      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
    • Jsingh
      Hi,  I care for my seven year old daughter with Celiac. After watching her for months, I have figured out that she has problem with two kinds of fats- animal fat and cooking oils. It basically makes her intestine sore enough that she feels spasms when she is upset. It only happens on days when she has eaten more fat than her usual every day diet. (Her usual diet has chia seeds, flaxseeds, and avocado/ pumpkin seeds for fat and an occasional chicken breast.) I stopped using cooking oils last year, and when I reintroduced eggs and dairy, both of which I had held off for a few months thinking it was an issue of the protein like some Celiac patients habe mentioned to be the case, she has reacted in the same fashion as she does with excess fats. So now I wonder if her reaction to dairy and eggs is not really because of protein but fat.   I don't really have a question, just wondering if anyone finds this familiar and if it gets better with time.  Thank you. 
    • Chanda Richard
      Hello, My name is Chanda and you are not the only one that gose through the same things. I have found that what's easiest for me is finding a few meals each week that last. I have such severe reactions to gluten that it shuts my entire body down. I struggle everyday with i can't eat enough it feels like, when I eat more I lose more weight. Make sure that you look at medication, vitamins and shampoo and conditioner also. They have different things that are less expensive at Walmart. 
    • petitojou
      Thank you so much! I saw some tips around the forum to make a food diary and now that I know that the community also struggles with corn, egg and soy, the puzzle pieces came together! Just yesterday I tried eating eggs and yes, he’s guilty and charged. Those there are my 3 combo nausea troublemakers. I’m going to adjust my diet ☺️ Also thank you for the information about MCAS! I’m from South America and little it’s talked about it in here. It’s honestly such a game changer now for treatment and recovery. I know I’m free from SIBO and Candida since I’ve been tested for it, but I’m still going to make a endoscopy to test for H. Pylori and Eosinophilic esophagitis (EoE). Thank you again!! Have a blessed weekend 🤍
    • knitty kitty
      Yes, I, too, have osteoporosis from years of malabsorption, too.  Thiamine and magnesium are what keep the calcium in place in the bones.  If one is low in magnesium, boron, selenium, zinc, copper, and other trace minerals, ones bone heath can suffer.  We need more than just calcium and Vitamin D for strong bones.  Riboflavin B 2, Folate B 9 and Pyridoxine B 6 also contribute to bone formation and strength.   Have you had your thyroid checked?  The thyroid is important to bone health as well.  The thyroid uses lots of thiamine, so a poorly functioning thyroid will affect bone heath.  
×
×
  • 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.