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

Rash Is Gone

bratcat

By bratcat
in Dermatitis Herpetiformis

Recommended Posts

bratcat Apprentice
bratcat
Posted
:P The rash that I had has gone away.It really healed up.From what happened I am not so sure that celiac is the only cause of HD.I had mine for 8 months before anyone was able to give me anything for it.At the time I got the rash I had just been put on some medication for restless legs,and had also been taking alot of ibuprofen.I quit taking the ibuprofen because of the bruising and bleeding it caused and I cut back on the other med.I have been plagued with this rash for over a year .I am so thankful that it is gone.I am still not totally gluten frree.When you are the only one who has celiac and have to cook for several people it is really hard to be gluten free.That is another reason I believe it was caused by something other than gluten.Anyone have any ideas on this?
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


lovegrov Collaborator
lovegrov
Posted

Were you actually diagnosed with DH? If a doctor actually diagnosed you with DH, then you almost without question have it. And if you have DH, then, according to all experts and the NIH, you most definitely have or will have celiac disease. You MUST remain gluten-free.

DH is strange (just like celiac disease). Some people break out like crazy with just small amounts of gluten and others heal up when they just cut back on gluten. Some take months and months to get rid of the DH and others (including me) get rid of it immediately. My father suffered from celiac disease for 20 years (he didn't know about the celiac disease connection); it disappeared for several years; and then it came back. Then he was diagnosed with celiac disease with no symptoms other than the celiac disease.

Nobody wants to have celiac disease, but if you truly have DH, you must, must remain gluten-free. If you don't, you could end up like me. I had DH for more than 20 years and was unaware of the celiac disease connection. The celiac disease finally caught up with me and nearly killed me. 11 days in the hospital, 10 weeks off work, and about a year to really recover.

richard

bratcat Apprentice
bratcat
Posted
  • Author

Yes I was diagnosed by a doctor after many months of testing.I had the rash for 8 months before diagnosis and no one could tell me what it was.I am more convinced that the rash was ibuprofen related because I had to take two doses of it and the rash is trying to come back.Iknow I have to get to where I am totally gluten-free,but it is so hard when no one else in the family has it.and I have to fix their food too.Also where I live people look at you like you have insulted them if you don't eat like everyone else.That or they give you a wide berth when you tell them you have celiac.The first thing I get asked is "is it catching?"I don't go out anymore because to go out to eat I just have to eat salads.That is the only thing I know is safe.

Pegster Apprentice
Pegster
Posted

Anti-inflamatory drugs like Ibuprofen can worsen DH. I finally connected my outbreaks with ALEVE. After taking it for a few days, I always have a flare up, but then it goes away. I am gluten free, and I can almost always trace an outbreak to either a gluten accident or taking an anti-inflamatory.

lovegrov Collaborator
lovegrov
Posted

Iodine can also cause flareups until you've completely healed.

richard

Archived

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

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

  • Member Statistics

    • Total Members
      133,666
    • Most Online (within 30 mins)
      7,748
    S.Aulman
    Newest Member
    S.Aulman
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Scott Adams
      how long does it take for the genetic blood test for celiac to come back?

      By Scott Adams · Posted

      Genetic testing for celiac disease (the HLA-DQ2 and HLA-DQ8 genes) usually takes about 3–10 days to come back, depending on the lab your doctor uses, though some places may take up to two weeks. The test itself doesn’t diagnose celiac disease—it only shows whether you carry the genes that make celiac possible. About 30–40% of people have one of these genes, but only a small percentage actually develop celiac disease. However, if the test is negative for both genes, celiac disease becomes extremely unlikely, which is why your doctor mentioned possibly canceling the endoscopy if the result is negative. If it’s positive, it just means celiac remains a possibility and further testing, like a gluten challenge followed by endoscopy, helps confirm it. Since you have an identical twin, it’s definitely useful information to share if the genes are present, because twins share the same genetic risk. It sounds like you found a very thorough GI doctor, which is great, especially since she’s also monitoring nutrients and looking at the whole picture.
    • knitty kitty
      Pain in the right side of abdomen

      By knitty kitty · Posted

      @Heatherisle, You're not a bother at all.   What "Vitamin B medication" is she taking?  Is it just B12 and folate?   All eight B vitamins, Vitamin D and other vitamins and minerals need to be supplemented because the malabsorption of Celiac disease affects all the nutrients.  All the B vitamins work together.  Just supplementing one or two can throw the other B vitamins out of balance causing worsening deficiencies in other B vitamins.  Doctors are undereducated about nutrition.  Heavy sigh. This is worrisome.  These are all symptoms of Gastrointestinal Beriberi caused by Thiamine deficiency.   An Erythrocyte Transketolace Activity Assay needs too be done to check her Thiamine level.  But because this test is so expensive and takes so long for the results to come back, it's much simpler to administer 500 mg Thiamine Hydrochloride several times a day for several days and look for health improvement (WHO recommendation).  Doctors can administer Thiamine Hydrochloride by IV along with a "banana bag" with all the B vitamins in it.  (Riboflavin gives it the yellow color.).  I've experienced vitamin deficiencies which my doctors didn't recognize.  When thiamine and B12 deficiencies started affecting my brain function, my doctors wrote me off as a depressed hypochondriac.  I had Gastrointestinal Beriberi myself.  I took over the counter thiamine hydrochloride at home and had health improvement within an hour.  High doses (500 mg) of Thiamine are needed to "jump start" the body into proper functioning.   Apologies if I was curt.  I get very frustrated because the nutritional deficiencies that occur with Celiac disease are not addressed properly.  All I can do is tell people about what I learned on my Celiac journey.  Have you visited my blog?  Tap on my name, look for pull down menu Activities and go to blog.   I do hope your daughter can get the nutritional support she needs.  I'm very worried.  Please keep us updated!
    • Heatherisle
      Pain in the right side of abdomen

      By Heatherisle · Posted

      Hi  Thank you, will tell her to do that
    • Scott Adams
      Pain in the right side of abdomen

      By Scott Adams · Posted

      I think a key thing here would be to ensure that the prescription(s) she started taking are actually gluten-free, as some contain wheat starch. In the USA we have a site you can check, not sure about the UK, but possibly. You can search this site for prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Heatherisle
      Pain in the right side of abdomen

      By Heatherisle · Posted

      Hi again Sorry to be a pain but my daughter started on her Vitamin B medication a week ago, not sure what dosage as she hasn’t said. However she has been feeling much worse the last couple of days with back pain, bowel and tummy problems, blurry vision, tingling. Had GP appointment after work and has been sent to hospital for scan of head and bloods. She should have had other bloods done when she had her B12 and folate done but GP didn’t put them on the list, ie Vitamin D levels, ferritin, thyroid function tests, glucose. She phoned us this morning very upset and worried. Told her it was probably the body’s reaction to the medication and that it might get worse before it gets better. My husband and I live in the Western Isles and she’s in Glasgow so we can’t exactly jump on a bus and be there at the moment. Hoping you have some words of wisdom for me and sorry again for annoying you. Thanks
×
×
  • 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.