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Do My Symptoms Sound Like Celiac?

Trademarked

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Trademarked Newbie
Trademarked
Posted

Here's my story. I'll try to summarize the best I can.

~ 8 months ago, I started itching on random areas of my body, especially at night. It was a nuisance, but nothing to be worried about, I attributed it to dry skin

~ 4 months ago, I started wondering why I continued to itch all over, and visited the doctor who said it was probably in my head (I do have high anxiety and worry)

~ 2 months ago, Still itching, I visited the doctor again who gave me a steroid moisturizing lotion, which did help with the itching, but had to be often reapplied

~ 6 weeks ago, Still itching, started to notice new feeling mild headaches, with one very intense attack, also noticing bone and joint pain, trouble focusing (vision), constipation after meals, light headedness, a nosebleed (haven't had one.. ever?), bruising on my legs.

~3 weeks ago, went to a dermatologist who suggested a basic blood test, everything negative

~2 weeks ago, went to an allergist and tested negative for wheat, soy, nuts, etc, suggested another blood test, everything negative, including any iron problems, celiac, thyroid, diabetes

~2 weeks ago, completely cut gluten from my diet, but keep slipping up and consuming it by accident, I do feel like I am more alert, and not in the fog that I was in

Things to note:

-I have had minor bowel problems for years

-I tend to stress myself out, and have high anxiety

-I am a vegetarian, I eat extremely healthy, but did consume a lot of wheat products, including actual wheat gluten protein, wheatgrass, wheatberries, and lots and lots of prepackaged foods.

-I had a huge piece of tofu (almost an entire package) in a vietnamese meal one night and felt so dizzy afterwards that I almost passed out, and debating calling for help.

-It seems like the symptoms come on strong after 10-30mins of consuming something with gluten (or possibly soy). On Tuesday I felt good until I had a salad with soy sauce in the dressing. After 15 mins I got the tingling in my arms, joint pains in arms, and an upset stomach, and got sick. The salad was only spinach, boiled egg, feta, onions, and the dressing. I itched that night and had the joint pains. The next day was better, but still itching and now my legs and butt seem itchy and have the pains, and then the next day was more mild but still itchy. Today is saturday and I am still itching like crazy, mainly on my butt and legs. It' almost like it moves down my body. Would an accidental ingestion of wheat cause symptoms to last this long afterwards?

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Dixiebell Contributor
Dixiebell
Posted

Welcome! Yes, reaction time and the severity of it will be different for everyone. Do you have copies of the tests so you can post your results? Oh, almost all soy sauce is made with wheat.

I have heard this from others, being sick and feeling unwell can cause anxiety. I no longer have the anxiety that started back in high school since being gluten-free, I'll be 39 soon.

Skylark Collaborator
Skylark
Posted

Your symptoms are a little unusual, but yes, long-lasting reactions are pretty common with gluten intolerance. Many of us are sick for days if we eat something like soy sauce. Are there ever blisters or a rash with the itching? Dermatitis herpetiformis is the skin version of celiac and it is very itchy.

Since you've had the medical workup, the thing to do is try the diet very strictly for a few months and see if the itching goes away. A lot of celiacs are sensitive to soy and dairy so your soy reactions are not surprising. I'd eliminate all three (if you even were eating dairy) and challenge only when the itching and symptoms have gone away for a few weeks.

Looking for answers Contributor
Looking for answers
Posted

Sounds like you might be allergic to soy. I would try cutting that out for a while as well. It's one of the seven most common allergens.

Mayflowers Contributor
Mayflowers
Posted

Sounds like you might be allergic to soy. I would try cutting that out for a while as well. It's one of the seven most common allergens.

I disagree. I think this person is have a reaction to their clothes detergent. I get the same itching from my clothes when I use certain brands of detergent. I also found it was the old washer machine because it wasn't rinsing the clothes well (Kenmore) I bought a new whirlpool washer and the difference was amazing. No itching. I also found that using Borax with the detergent and rinsing twice really gets the detergent out of the clothes. You can also try using Ivory Snow with borax and see if that helps. :)

  • 1 month later...
Trademarked Newbie
Trademarked
Posted
  • Author

Sorry for the delayed response. My post didn't get approved for quite some time and I forgot what site I submitted it on.

Welcome! Yes, reaction time and the severity of it will be different for everyone. Do you have copies of the tests so you can post your results? Oh, almost all soy sauce is made with wheat.

I have heard this from others, being sick and feeling unwell can cause anxiety. I no longer have the anxiety that started back in high school since being gluten-free, I'll be 39 soon.

I have 3 tests now, and Id be glad to show them to anyone, but the doctors tell me that everything is normal. They state there are no deficiencies and that all values are in the proper range. Soy sauce has become a consistent cause of reactions for me.

Your symptoms are a little unusual, but yes, long-lasting reactions are pretty common with gluten intolerance. Many of us are sick for days if we eat something like soy sauce. Are there ever blisters or a rash with the itching? Dermatitis herpetiformis is the skin version of celiac and it is very itchy.

Since you've had the medical workup, the thing to do is try the diet very strictly for a few months and see if the itching goes away. A lot of celiacs are sensitive to soy and dairy so your soy reactions are not surprising. I'd eliminate all three (if you even were eating dairy) and challenge only when the itching and symptoms have gone away for a few weeks.

After this post I developed a rash all over my chest. The dermatologist gave me cream which made it go away. It tends to grow and fade, possibly in sync with my reactions. I tried eating tons of dairy for 2 days, and I had a significant increase in my symptoms. I also tried eating peanuts on 4 separate occasions and each time I had a medium to severe reaction after 30 minutes. It's odd that I would react to both soy and peanuts.

Sounds like you might be allergic to soy. I would try cutting that out for a while as well. It's one of the seven most common allergens.

I thought that might be the case, but after the peanut reactions it seems odd that I'd be allergic to both so suddenly.

I disagree. I think this person is have a reaction to their clothes detergent. I get the same itching from my clothes when I use certain brands of detergent. I also found it was the old washer machine because it wasn't rinsing the clothes well (Kenmore) I bought a new whirlpool washer and the difference was amazing. No itching. I also found that using Borax with the detergent and rinsing twice really gets the detergent out of the clothes. You can also try using Ivory Snow with borax and see if that helps. :)

I wish it were that simple. I've tried all the special detergents. The itching is clearly linked to something I am eating. It always comes 30 minutes after eating.

Skylark Collaborator
Skylark
Posted

After this post I developed a rash all over my chest. The dermatologist gave me cream which made it go away. It tends to grow and fade, possibly in sync with my reactions. I tried eating tons of dairy for 2 days, and I had a significant increase in my symptoms. I also tried eating peanuts on 4 separate occasions and each time I had a medium to severe reaction after 30 minutes. It's odd that I would react to both soy and peanuts.

It's not odd at all. Soy cross-reaction is rather common in peanut allergy. Both plants are legumes.

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Trademarked Newbie
Trademarked
Posted
  • Author

It's not odd at all. Soy cross-reaction is rather common in peanut allergy. Both plants are legumes.

Good to know. Is there such a thing as a peanut intolerance as opposed to an allergy? I was tested for an immediate reaction but it was negative.

Skylark Collaborator
Skylark
Posted

A "medium to severe" rash reaction in only 30 minutes is most likely true allergy. Does Benedryl help? Also, peanuts are known to be rather allergenic.

Also, in your case there would be no functional difference between allergy and intolerance, right? The food makes you sick so you avoid it.

Trademarked Newbie
Trademarked
Posted
  • Author

A "medium to severe" rash reaction in only 30 minutes is most likely true allergy. Does Benedryl help? Also, peanuts are known to be rather allergenic.

Also, in your case there would be no functional difference between allergy and intolerance, right? The food makes you sick so you avoid it.

The rash doesn't come on quick actually. It's very delayed, and not consistent. Benedryl doesn't help at all, I think it used to, but it seems that I'm getting used to any meds that help.

Skylark Collaborator
Skylark
Posted

What is the 30 minute reaction?

Trademarked Newbie
Trademarked
Posted
  • Author

What is the 30 minute reaction?

The 30 minute reaction is sharp pin like pains in my hands, feet, and sometimes on my butt. The pains seem to correspond to hives forming, and my skin seems to dry out in those areas despite constant lotioning. In addition, I get groggy, my head can hurt a bit, my vision blurs a bit, and I get incredibly itching under my skin. It's an itch I cannot get to, so it becomes maddening. Sometimes my stomach will be uncomfortable and bloated.

Skylark Collaborator
Skylark
Posted

Yeah, that sure sounds like allergy. Itching is a really classic sign of histamine release, and the groginess and headache is the systemic part of the reaction. I'll never forget the intense itching under the skin like you describe on my hands and face when I had a severe medication reaction once. It came on about 20 minutes after the pill and I ended up in the hospital. I'm surprised your doctor isn't concerned.

Trademarked Newbie
Trademarked
Posted
  • Author

Yeah, that sure sounds like allergy. Itching is a really classic sign of histamine release, and the groginess and headache is the systemic part of the reaction. I'll never forget the intense itching under the skin like you describe on my hands and face when I had a severe medication reaction once. It came on about 20 minutes after the pill and I ended up in the hospital. I'm surprised your doctor isn't concerned.

I moved recently, so I dont have a prior relationship with this doctor. He keeps telling me its a mental thing.....

Skylark Collaborator
Skylark
Posted

If a doctor tells you something obviously physical is in your head, it's time to find a new doctor. :ph34r:

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