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

Reactivation Or Something Else?


momxyz

Recommended Posts

momxyz Contributor

I've been on this forum for almost exactly two years. My daughter has been gluten free for 2 years; my 2nd year aniversary is Aug. 10.

I went gluten free to see if it would help with a perisistent, itchy rash of 10 months duration on my legs. It was so bad I couldn't wear shorts the summer of 09, and if I had to wear a dress, had to wear black pantyhose. Did that for two summer weddings - no fun!

But with time on the gluten free diet, the rash began to disappear. Early on, accidental or not so accidental gluten exposures quickly produced a reactivation in the form of new itchy blisters. As time went on, the time lapse between exposure lengthened, and the extent of reactivation of the rash decreased. So it seemed I was becoming more "tolerant". My last purposeful fall off the wagon was last Christmas time. If you remember me posting about that, I want to thank you all for your advice because it helped!

Last summer, 2010, I still had the rash tho it was much reduced and by the end of summer was pretty much gone. By this spring, even most of the purple spots had faded, so I have been comfortable and happy wearing shorts!!! good thing because has it been HOT!

Something weird happened this past weekend. Being beastly hot, Thursday and Friday I took the dogs to the beach in the evening. Only problem, was the horseflies were out and I got bit several times. Then in the garden over the weekend, there were the mosquitoes. More bites. (Two years not wearing shorts, I didn't think about spraying myself!)

The bites started to bother me on Sunday, enough to go buy a new tube of Gold Bond cream. This morning, (Monday) I was really surprised to see how bright red some of the bite spots looked, as well as a spot that was obviously a scratching place.

These areas weren't like the old rash, other than that bright red color! And today I have had the most horrible stomach. Rumbly and gassy. (Mind you, GI symptoms were not what prompted me to go gluten-free two years ago, they were minimal to none.) I didn't feel like eating anything at all until early evening, and some cheese and nuts sufficed.

I am comfortable now and the red areas are less angry but I am wondering a) was I glutened, and did that exacerbate the normal itchiness of bug bites? B) was my rumbly stomache a coincindence?

Ok over the weekend meat,veggies, fruit, cheese...good whole foods. Only questionable items were Lays potato ships, Klondike bars (original) and a grill sauce used on salmon. only questionable ingredient in that was soybean oil.

Insights, or similar experiences, anyone?


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



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor

Had the grill been used for anything with gluten? It is best for us to use foil under anything on a grill that is not dedicated gluten free. Another possibility- was there distilled vinegar in the salmon sauce? If so you could be one of the minority of celiacs who reacts to distilled gluten grains.

momxyz Contributor

Had the grill been used for anything with gluten? It is best for us to use foil under anything on a grill that is not dedicated gluten free. Another possibility- was there distilled vinegar in the salmon sauce? If so you could be one of the minority of celiacs who reacts to distilled gluten grains.

No, the grill is practically brand new, and nary a bun has touched it this summer! Also, my husband got this special tray for putting things like fish and scallops on. But, when I came home tonite, I pulled the bottle of sauce out of the fridge, and distilled vinegar was the second ingredient on the list.

I have a few questions for you!

1. This wasn't the first time we had used the sauce this summer. I've had it at least two or three times before, without feeling itchy or that rumbly tummy. but I am wondering. Last December, when I went on my little cookie binge, it took 3 nights of munching on my sister's cookies before ingesting gluten caused a noticeable reaction. Does it make sense to you that once I've gotten to the point where I have been mostly healed, that I appear to be more "tolerant", and it might take repeated exposures for me to noticeably feel ill effects? Supporting this idea is that I had the leftover salmon for lunch on Tuesday... and this morning had a couple of new itchy areas that definitely had nothing to do with bug bites!

2. Distilled gluten grains.... distilled vinegar... I thought vinegar was made from apples (white) or wine (red)? I ate salt and vingear flavored almonds over the weekend too....... Ok I can live without the sauce and the flavored stuff. Tell me, will red wine vinegar still be ok???

thanks ravenwood, I appreciate your help. Oh and guess what, even tho I'm way beyond the point where antibody or biopsy would have a hope in heck of being positive, I am having a DQ analysis done soon! should be interesting....

ravenwoodglass Mentor

No, the grill is practically brand new, and nary a bun has touched it this summer! Also, my husband got this special tray for putting things like fish and scallops on. But, when I came home tonite, I pulled the bottle of sauce out of the fridge, and distilled vinegar was the second ingredient on the list.

I have a few questions for you!

1. This wasn't the first time we had used the sauce this summer. I've had it at least two or three times before, without feeling itchy or that rumbly tummy. but I am wondering. Last December, when I went on my little cookie binge, it took 3 nights of munching on my sister's cookies before ingesting gluten caused a noticeable reaction. Does it make sense to you that once I've gotten to the point where I have been mostly healed, that I appear to be more "tolerant", and it might take repeated exposures for me to noticeably feel ill effects? Supporting this idea is that I had the leftover salmon for lunch on Tuesday... and this morning had a couple of new itchy areas that definitely had nothing to do with bug bites!

2. Distilled gluten grains.... distilled vinegar... I thought vinegar was made from apples (white) or wine (red)? I ate salt and vingear flavored almonds over the weekend too....... Ok I can live without the sauce and the flavored stuff. Tell me, will red wine vinegar still be ok???

thanks ravenwood, I appreciate your help. Oh and guess what, even tho I'm way beyond the point where antibody or biopsy would have a hope in heck of being positive, I am having a DQ analysis done soon! should be interesting....

It can take a few days for a reaction to show up. In myself it takes about 3 days even in the beginning when I was on an elimination diet. My doctor said that is not uncommon and was the reason he told me to eat the suspect food 3 times a day for a week, or until the reaction. If you suspect the reaction may have come from a particular item you could do a challenge with it by doing the 3 times a day for week and watch for a reaction. Since reactions can be delayed you may have had a reaction to something you ate earlier in the week.

Malt vinegar is out for us but red wine vinegar is fine. On label if it just says vinegar in the US that would be apple cider vinegar. That would be safe. Distilled vinegar is not always derived from gluten ingredients and can be derived from other grains. Heinz white vinegar is made from corn for example. I usually call the company and ask what it is made from since I do react to distilled gluten.

As for the gene testing do keep in mind that doctors usually only check for the 2 most common genes and it is very possible to have other celiac related genes. While gene testing can be helpful it is not diagnostic.

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Jacki Espo replied to Itsabit's topic in Dermatitis Herpetiformis
      6

      SkinSafe

    2. - Itsabit replied to Itsabit's topic in Dermatitis Herpetiformis
      6

      SkinSafe

    3. - Itsabit replied to Itsabit's topic in Dermatitis Herpetiformis
      6

      SkinSafe

    4. - cristiana replied to Cathijean90's topic in Introduce Yourself / Share Stuff
      2

      I’m terrified it’s too late for me😭

    5. - Jack Common replied to Jack Common's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      32

      What should I do with these test results?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      128,318
    • Most Online (within 30 mins)
      7,748

    Mor
    Newest Member
    Mor
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.8k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Jacki Espo
      I should add that I had a flare up I think was from cross contamination and during that time I ate gluten free chips and immediately had severe itching at the breakout site. I suspected it was the iodine in the salt from the chips that did it. It seems like iodine may impact a flare up but does not impact me if I’m otherwise not experiencing the rash.  Good luck. Wishing you the best. 
    • Itsabit
      Reply to Jackie, Thank you. I have not been eating any oats at all, but I am aware of a possible correlation. And I already rarely eat out, and not recently. So, whatever this is, I’m doing it to myself, somehow. 🤷‍♀️
    • Itsabit
      Reply to Trent’s, Hi. Thanks for the welcome but I would truly rather to not have to be here. I’ve been researching everything I can about this dermatitis herpetiformis. I did read about Iodine, but to be honest I didn’t think it could be me. Maybe wishful thinking would be more likely. I already have so many eating issues from long term effects of radiation, that going gluten free is hard enough. Add to that low iodine and I may just as well not eat at all.  I’ve never been a big meat eater. I eat it, as well as poultry, pork, etc., but small portions. I have not been able to eat most fruits due to the burning and stinging of my mouth, tongue and throat, and the sour taste. Same with condiments containing vinegar. Mayonnaise I can handle. Mustard, ketchup, salad dressings, pickles all burn like the dickens, as does fruit, esp citrus. I dip the tines of my fork into a mild dressing when eating salads. I am able to eat a banana as long as I drink water right away, with it still in my mouth. Strawberries taste like I poured salt on them.  Fruit juices are a no go as well. And I use gravies and non-spicy sauces to moisten everything I eat. That leaves me with vegs, dairy and carbs. I’ve recently gone gluten free. But dairy! I love. It’s cooling and soothing to my burning mouth. Milk, cheese, ice cream, eggs…all big in iodine.  I am unable to swallow any pills whole any longer, so I have to crush or chew them and I have been mixing them in yogurt of late. I like most vegs, but I use butter on them. I don’t add table salt on anything, iodized or not. Carbs are pretty much self explanatory; soft, easy chew, easy to swallow. I’ve purchased gluten free versions, but have not even tried them yet. No desserts because of gluten. I like and would use peanut butter, though not frequently.  I only am able to drink water. No coffee or tea because caffeine now keeps me awake. Tea leaves a squeaky dryness in my mouth, (as do apples). I can’t drink any carbonated drinks because the bubbles burn and sting my mouth and throat. Same thing goes with alcohol. No beer, wine or hard liquor of any kind. I have requested a serum iodine level to be ordered. I have a vitamin B12 level already ordered, and I am awaiting results of my skin biopsy. If this turns out to be iodine related, I don’t know what I’m going to do. Gluten free is bad enough - but it’s managable. Low iodine is another story altogether. I’m terrified. But I thank you for mentioning it and bringing it to the forefront of my mind from the back of it. 
    • cristiana
      Hello @Cathijean90 Firstly, welcome to the forum, you have come to the right place! I know this is much easier to say than to do, but try not to worry.  Whilst it is awful on so many levels that you have only just found out that Coeliac Disease is the issue behind all your problems, when you could have known 15 years ago, as Trents has said, it is really not at all uncommon for people to have symptoms for years before the doctors know what they are dealing with.  I was worried, too, that I'd never get better when I was first diagnosed.  My nutritionist said it wasn't too late and I didn't believe her!  But you know what -  I am feeling so much better now.  I've known of people living near me who were diagnosed in their 70s and 80s and have bounced back, and my consultant has even diagnosed someone in their 90s!  So being diagnosed older is something that also happens a lot. I am now in my 50s but my first symptoms, looking back, probably started with bouts of diarrhea in my teens and terrible nauseating migraines in my 20s, with a mouth full of ulcers twice in my 30s, aura migraines starting with my first pregnancy at 34, hallucinations with both pregnancies and a pre-term baby with my second pregnancy.  Weird liver function tests suggestive and iron deficiency, which sent me into a spin because my GP said it might be a type of cancer, then blood in my stools and clinical anxiety in the months prior to my diagnosis.    Wow - what gluten can do to someone!  But now, apart from a few minor issues with aura migraines, these issues have gone away.  It has been so worth giving up gluten, people say I have good self-control but frankly, and I am sure you feel the same, knowing how sick gluten can make us, I'm not remotely interested in eating gluten ever again! I've recently discovered my GP didn't tell me my cholesterol is creeping up when he tested me three years ago.  If I had known I'd have started being much more careful with my diet.  I dread to think what my cholesterol levels are now,  I'll have to do a test sooner or later but I do need to try to do something about it now.  So I do relate with your situation. To have not had the diagnosis passed onto you is awful.  But the good news is you do know now.   Also, you will be taking your diet seriously, which will give you the best chance of a good recovery.   Kick gluten out of your diet, get your doctor to run some tests to see if you have any vitamin deficiencies, and address those, and also see if you have any thyroid issues which occasionally affect coeliacs and can be easily treated.   Build your strength up with the best whole food you can manage, and try to take one day at at time.  On having children:  my friend had a series of miscarriages before she was diagnosed with coeliac disease, and then when she started a gluten free diet, no more - she carried two more pregnancies to term.   I am so glad you have a faith, my Christian faith has been a huge help to me on my journey.   Two  books on anxiety and depression too, helped, if you feel you are struggling with either or both.  The Depression Cure: The Six-Step Programme to Beat Depression Without Drugs, by Dr Steve Llardi, and At Last a Life by Paul David.  Both available online. Come back to us if you have any more questions.  You are not alone. Cristiana    
    • Jack Common
      Thank you for your answer. I read it here: https://www.beyondceliac.org/celiac-disease/non-celiac-gluten-sensitivity/ With the title "What’s the Difference Between Gluten Sensitivity and Celiac Disease?"
×
×
  • Create New...