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Reactivation Or Something Else?


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#1 momxyz

 
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Posted 25 July 2011 - 06:30 PM

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?
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#2 ravenwoodglass

 
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Posted 27 July 2011 - 04:59 AM

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.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#3 momxyz

 
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Posted 27 July 2011 - 06:26 PM

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....
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#4 ravenwoodglass

 
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Posted 28 July 2011 - 03:43 AM

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.
  • 0
Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)




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