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

Long Time Celiac But Experiencing New Problems Need Some Guidance

swatson

By swatson
in Coping with Celiac Disease

Recommended Posts

swatson Rookie
swatson
Posted

hi. I have been diagnosed with celiac since 1996. I had my share of two years of mistakes trying to adhere to this diet. For about 5-6 years I had hardly any mistakes and felt great. I know every ingredient and what to look out for. Recently for about a year now I have been experiencing gluten attacks similar to when I was first diagnosed. I know for a fact that I ate something over the holidays with either soy or gluten at a restaurant. I found out after begging them and talking to the chef to keep it free of everything. I had an immeditae reaction. I would like to know if anyone has the same kind of reaction that I have. About a week after eating gluten (by accident) I break out in a red rash on my neck and ears. They get super red hot. I have to put ice on them. It only happens after I eat and about a week after messing up. I then get wicked stomach pain followed by depression and anxiety sympotms for about two days then muscle cramping and bone pain. Then I am so exhausted I just fall a sleep when I get home from work.

I also have little white blisters on my forehead. Please let me know if anyone else has these same

symptoms.

Also does rice bother anyone?

thanks.

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

Celiac.com Sponsor (A8-M):


Merika Contributor
Merika
Posted

Hi,

I don't get the skin stuff. I do get stomach problems, nausea, anxiety and fatigue. And the symtpoms follow a predictable pattern day by day after the event, like you said.

Sorry you've been glutened/soyed. :( That sucks. I've been gluten-free for 2 years, and done really really mess-up free for the last 1 1/2 yrs, until we had a little get-together with some neighbors who brought a pie, and I was careful, but there must have been some cross-contamination because both ds and I got sick.

Merika

hope you're feeling better soon

PS. my son gets tiny skin bumps when he eats eggs...

CeliaCruz Rookie
CeliaCruz
Posted

I get the white blisters. I think. Do they resemble acne? I used to think they were whiteheads and I'd try to pop them but they were unpoppable -- almost like warts or something. I get them all over my face. I told my dermatologist that I was a Celiac and suggested to him that these might be DH, but he assured me they weren't DH and put me on anti-biotics to clear them up. They've gotten "better" but they haven't totally cleared up.

The redness on the ears sounds like it might be rosacea -- which I also have. Do you notice that the flareups happen when you've just had alcohol or caffiene?

Carriefaith Enthusiast
Carriefaith
Posted
About a week after eating gluten (by accident) I break out in a red rash on my neck and ears. They get super red hot. I have to put ice on them. It only happens after I eat and about a week after messing up. I then get wicked stomach pain followed by depression and anxiety sympotms for about two days then muscle cramping and bone pain. Then I am so exhausted I just fall a sleep when I get home from work.
Those symptoms are very similar to mine. I also get a rash/hives, severe stomach pain, depression, increased anxiety to the point where I get heart palpitations, and I also get GI problems. I actually just had a mild gluten reaction this week and I got a rash/hives over most of my legs. The rash was hot after being outside in cold temperatures and after a shower.
Rusla Enthusiast
Rusla
Posted
I get the white blisters. I think. Do they resemble acne? I used to think they were whiteheads and I'd try to pop them but they were unpoppable -- almost like warts or something. I get them all over my face. I told my dermatologist that I was a Celiac and suggested to him that these might be DH, but he assured me they weren't DH and put me on anti-biotics to clear them up. They've gotten "better" but they haven't totally cleared up.

The redness on the ears sounds like it might be rosacea -- which I also have. Do you notice that the flareups happen when you've just had alcohol or caffiene?

I get the same thing and my dermatologist said the exact same thing. I told him to humor me and do a skin biopsy and it came back positive. Do yours itch and you get a rash with them? Mine only happen when I have been glutened.

luvs2eat Collaborator
luvs2eat
Posted

No rashes here... but I'm experiencing similar "attacks" (all intestinal) after years of being fine. I think I've gotten quite careless and have been accidentally glutened several times in the past month. For example... I JUST learned that many of the light sour creams have modified food starch... I've NEVER even looked at the label, cause how would wheat, etc. go in sour cream???

I am back to reading EVERY SINGLE LABEL EVERY SINGLE TIME. When did I become so confident and stop doing that anyhow??

swatson Rookie
swatson
Posted
  • Author
hi. I have been diagnosed with celiac since 1996. I had my share of two years of mistakes trying to adhere to this diet. For about 5-6 years I had hardly any mistakes and felt great. I know every ingredient and what to look out for. Recently for about a year now I have been experiencing gluten attacks similar to when I was first diagnosed. I know for a fact that I ate something over the holidays with either soy or gluten at a restaurant. I found out after begging them and talking to the chef to keep it free of everything. I had an immeditae reaction. I would like to know if anyone has the same kind of reaction that I have. About a week after eating gluten (by accident) I break out in a red rash on my neck and ears. They get super red hot. I have to put ice on them. It only happens after I eat and about a week after messing up. I then get wicked stomach pain followed by depression and anxiety sympotms for about two days then muscle cramping and bone pain. Then I am so exhausted I just fall a sleep when I get home from work.

I also have little white blisters on my forehead. Please let me know if anyone else has these same

symptoms.

Also does rice bother anyone?

thanks.

hi. I have been diagnosed with celiac since 1996. I had my share of two years of mistakes trying to adhere to this diet. For about 5-6 years I had hardly any mistakes and felt great. I know every ingredient and what to look out for. Recently for about a year now I have been experiencing gluten attacks similar to when I was first diagnosed. I know for a fact that I ate something over the holidays with either soy or gluten at a restaurant. I found out after begging them and talking to the chef to keep it free of everything. I had an immeditae reaction. I would like to know if anyone has the same kind of reaction that I have. About a week after eating gluten (by accident) I break out in a red rash on my neck and ears. They get super red hot. I have to put ice on them. It only happens after I eat and about a week after messing up. I then get wicked stomach pain followed by depression and anxiety sympotms for about two days then muscle cramping and bone pain. Then I am so exhausted I just fall a sleep when I get home from work.

I also have little white blisters on my forehead. Please let me know if anyone else has these same

symptoms.

Also does rice bother anyone?

thanks.

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

Celiac.com Sponsor (A8-M):


traveljunkie Rookie
traveljunkie
Posted

Hello swatson,

I have a similar reaction as yours...my ears get red hot too! Then I break out in a rash and diarrhea typically the next day. I must admit I ate gluten knowingly as well in the past few weeks. (cheese bread and a piece of cake) The next day I definiatly had brain fog...couldn't think of the right words to say! :(

The only time rice bothered me was when I was really sick and didn't know what was causing it. Everything bothered me, but now rice is a staple in my diet. I have heard that it can bother some people, everyone is different and if your intestines are irritated, it's more likely you'll be more intolerant to a lot of different foods.

Charlene

Pegster Apprentice
Pegster
Posted

I also get the bumps (like little blisters for me) when I'm glutened. I have definitely been diagnosed with DH so I always just assume that's what it is. I have been gluten-free for nearly two years and it always seems to be a restaurant that messes me up. I have also had the red ear thing, but I never associated it with gluten! Hmmm.

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.