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

Eating Gluten But Not Reacting?!

bluewhitesky

By bluewhitesky
in Dermatitis Herpetiformis

Recommended Posts

bluewhitesky Rookie
bluewhitesky
Posted

In a strange turn of events, my DS (age 6) has been eating gluten for a couple of weeks and in the last 5 days has had absolutely no flare up of his rash. I started him eating it again to get his rash to flare up so we can get a biopsy. We went on vacation to NYC for the long weekend and it was wonderful to let him eat what he wanted. I was expecting a flare up (as usual) but nothing...not an itch, not a blister. In facts his older open lesions are all almost completely dried and healing. His older closed lesions are now just smooth purple spots.

 

Of course I'm very happy for him to be comfortable (it's been over a year of this)....but just when I thought I'd figured it out, I'm thrown for a loop.

 

Does this sound like it's even possible that it's still DH? (derm said "mild case" not biopsied yet)

 

I have read that DH can come and go, but it hasn't been the case with my DS, until now. And really, he didn't eat just a bit of gluten. Over 4 days he had pizza, toast, a cookie, half a big pretzel, sandwiches! He was in heaven!

 

I'm thrilled if it isn't DH of course, but then there's the question of what the heck is it?

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

Celiac.com Sponsor (A8-M):


squirmingitch Veteran
squirmingitch
Posted

It's really hard to say what it is. And there is still the possibility it's dh. DH can come & go even if one is eating gluten. If it is dh, then inevitably one day it will come with a vengeance but there is no telling when that day will come. It could be years or it could be weeks. Or maybe he doesn't have dh at all & isn't celiac. I know it's frustrating as heck for you. So at this point, I would say the only thing you can do is just let him eat gluten & enjoy life. If he flares again, you go get a dh biopsy.

bluewhitesky Rookie
bluewhitesky
Posted
  • Author

Thanks again squirmingitch for your response. You're right...it's nice to let DS enjoy eating what he wants without itching. I just need to relax about having all the answers for now. 

 

He did have a bit of a flare up last night about 2 hours after dinner. No gluten at dinner, so it doesn't totally make sense, but I'm just going to roll with it.

 

edited to add: Shrimp! That's what we had for dinner...the iodine could have done it I suppose.

kareng Grand Master
kareng
Posted

Thanks again squirmingitch for your response. You're right...it's nice to let DS enjoy eating what he wants without itching. I just need to relax about having all the answers for now. 

 

He did have a bit of a flare up last night about 2 hours after dinner. No gluten at dinner, so it doesn't totally make sense, but I'm just going to roll with it.

 

edited to add: Shrimp! That's what we had for dinner...the iodine could have done it I suppose.

 

 

Maybe its not gluten?  Maybe his rash is caused by something else?  

squirmingitch Veteran
squirmingitch
Posted

The iodine in the shrimp could have done it. Or, is it possible he has a shellfish allergy??????????

bluewhitesky Rookie
bluewhitesky
Posted
  • Author

Maybe its not gluten?  Maybe his rash is caused by something else?  

 

I'm hoping it's something else, I just don't know what. The doctors haven't agreed on anything. 

bluewhitesky Rookie
bluewhitesky
Posted
  • Author

The iodine in the shrimp could have done it. Or, is it possible he has a shellfish allergy??????????

 

Well, he hasn't reacted to shellfish before but I'm not ruling anything out. 

 

He just came home from school, scratching a bit. I asked to have a look at his rash. He's getting sick of me looking at his butt!! Poor kid. 

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

Celiac.com Sponsor (A8-M):


squirmingitch Veteran
squirmingitch
Posted

((((HUGS))))

124chicksinger Apprentice
124chicksinger
Posted

I know I'm late to the game on this but don't want to go back re-reading to find out - but did the dr. do a blood test for celiac, and did you take him to an allergist for skin prick tests to rule stuff out?

bluewhitesky Rookie
bluewhitesky
Posted
  • Author

I know I'm late to the game on this but don't want to go back re-reading to find out - but did the dr. do a blood test for celiac, and did you take him to an allergist for skin prick tests to rule stuff out?

Thanks for your response!

 

Yes, we had a tTG and total serum IgA, both normal. GP did a tele-derm (email photo) with pediatric derm who said molluscum, which even the GP disagreed with. Real live dermatologist a few weeks ago who said it looks like DH and prescribed hydrocortisone and said to come back for a biopsy in 6 weeks (but I'm not doing the hydrocortisone as I know it will negate biopsy).

 

He had a skin prick test with an allergist four years ago, when he was 2, long before the rash (looking for asthma triggers). Only cats and dust mites came up. The doctors haven't suggested this again this time around, but I will definitely suggest it. I've been trying to keep a look out for other things that he could be reacting too.

 

Since I posted, the rash has definitely flared up again, not as badly as usual. 

MGR Apprentice
MGR
Posted

My daughter had molluscum a couple of years ago... An important difference with DH is that it is not itchy and once it appears it takes about a year to clear up by itself, it does not come and go and is highly infectious- the doctor might give you something for it but it is generally useless as it has to run its course. if you have other children you have to make sure they don't have baths together or share towels. DH is extremely itchy, non contagious ( obviously, because it is genetic) and can come and go. I think molluscs it is a fungal infection. Also they look completely different.

  • 3 weeks later...
bluewhitesky Rookie
bluewhitesky
Posted
  • Author

Thanks MGR, I missed your post somehow. Thanks for explaining the differences with molluscum. That helped. Yep, it definitely doesn't look like molluscum and it's definitely itchy unlike molluscum. Also my daughter, who baths with my son, shares everything, etc. hasn't caught it in all this time. So molluscum is definitley ruled out.

 

As for DH, I'm still thinking that that's what we're dealing with and it's just in a "going" stage. DS has a few spots here and there, nothing like before. The old ones are now mostly purple scars.  He's been getting emotional/moody/short tempered and I feel this could be gluten related because it is how I react. 

 

I feel guilty hoping that his rash flares up. My worry is that he seems better so I keep feeding him gluten when in fact I'm damaging him. So I really want the flare(small), a biopsy and the elusive diagnosis. And if that could happen for our appointment with the derm on May 28th that would be great...LOL.  Or if it was determined to 100% be something else, treatable, and easy to live and would take the celiac question out of play completely well, that would be best. 

 

I found a picture online that is exactly what my son's rash looked like. I'll find it and make a separate post.

Archived

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

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


  • Member Statistics

    • Total Members
      131,855
    • Most Online (within 30 mins)
      7,748
    Tara M
    Newest Member
    Tara M
    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

    • cristiana
      Ibuprofen

      By cristiana · Posted

      @Colleen H   I am just curious,  when you were tested for coeliac disease, did the doctors find out if you had any deficiencies? Sometimes muscle pain can be caused by certain deficiencies, for example, magnesium, vitamin D, calcium, and potassium.   Might be worth looking into having some more tests.  Pins and needles can be neuropathy, again caused by deficiencies, such as iron and B12,  which can be reversed if these deficiencies are addressed. In the UK where I live we are usually only tested for iron, B12 and vitamin D deficiencies at diagnosis.   I was very iron anemic and supplementation made a big difference.  B12 was low normal, but in other countries the UK's low normal would be considered a deficiency.  My vitamin D was low normal, and I've been supplementing ever since (when I remember to take it!) My pins and needles definitely started to improve when my known deficiencies were addressed.  My nutritionist also gave me a broad spectrum supplement which really helped, because I suspect I wasn't just deficient in what I mention above but in many other vitamins and minerals.  But a word of warning, don't take iron unless blood tests reveal you actually need it, and if you are taking it your levels must be regularly monitored because too much can make you ill.  (And if you are currently taking iron, that might actually be making your stomach sore - it did mine, so my GP changed my iron supplementation to a gentler form, ferrous gluconate). Lastly, have you been trying to take anything to lessen the pain in your gut?  I get a sore stomach periodically, usually when I've had too much rich food, or when I have had to take an aspirin or certain antibiotics, or after glutening.  When this happens, I take for just a few days a small daily dose of OTC omeprazole.  I also follow a reflux or gastritis diet. There are lots online but the common denominators to these diets is you need to cut out caffeine, alcohol, rich, spicy, acidic food etc and eat small regularly spaced meals.   When I get a sore stomach, I also find it helpful to drink lots of water.  I also find hot water with a few slices of ginger very soothing to sip, or camomile tea.  A wedge pillow at night is good for reflux. Also,  best not to eat a meal 2-3 hours before going to bed. If the stomach pain is getting worse, though, it would be wise to see the doctor again. I hope some of this helps. Cristiana    
    • Me,Sue
      Knowing what to do when feeling unwell.

      By Me,Sue · Posted

      I was diagnosed with coeliac disease a couple of years ago [ish]. I love my food and a variety of food, so it's been hard, as it is with everyone. I try and ensure everything I eat doesn't contain gluten, but occasionally I think something must have got through that has gluten in. Mainly I know because I have to dash to the loo, but recently I have noticed that I feel nauseous after possibly being glutened. I think the thing that I have got better at is knowing what to do when I feel wiped out after a gluten 'episode'. I drink loads of water, and have just started drinking peppermint tea. I also have rehydration powders to drink. I don't feel like eating much, but eventually feel like I need to eat. Gluten free flapjacks, or gluten free cereal, or a small gluten free kids meal are my go to. I am retired, so luckily I can rest, sometimes even going to bed when nothing else works. So I feel that I am getting better at knowing how to try and get back on track. I am also trying to stick to a simpler menu and eat mostly at home so that I can be more confident about what I am eating. THANKS TO THOSE WHO REPLIED ABOUT THE NAUSEA .
    • Francis M
      The Happy Tart review

      By Francis M · Posted

      Thanks. Since the back and forth and promises of review and general stalling went on for more than six months, the credit company will no longer investigate. They have a cutoff of maybe six months.
    • Scott Adams
      The Happy Tart review

      By Scott Adams · Posted

      Is this the same restaurant? https://www.facebook.com/TheHappyTartFallsChurch/ Is it too late to take this up with your credit card company? Normally you have a few months to do a chargeback with them. It seems very odd that they are taking this approach with someone who is likely to be a regular customer--not a good business-minded way of handling things!
    • Scott Adams
      Stomach burning and neuropathy

      By Scott Adams · Posted

      Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. Because of this it took me decades to overcome a few long-standing issues I had that were associated with gluten ataxia, for example numbness and tingling in my feet, and muscle knots--especially in my shoulders an neck. Only long term extensive supplementation has helped me to resolve these issues.        
×
×
  • 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.