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Newly diagnosed

trying2heal
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trying2heal Newbie
trying2heal
Posted

I've been very careful since diagnosis this past Saturday. Today my friend made me supposedly gluten free spaghetti. I enjoyed it but since then I have horrible body rash that feels like stinging all over and intense itching! I was also cleaning with comet earlier but this is a severe reaction.  Do you think I've been glutened?

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trents Grand Master
trents
Posted

Welcome to the forum, trying2heal!

Before diagnosis, did you get this type of reaction when consuming gluten?

trying2heal Newbie
trying2heal
Posted
  • Author
1 minute ago, trents said:

Welcome to the forum, trying2heal!

Before diagnosis, did you get this type of reaction when consuming gluten?

I would occasionally get raised lines always on neck sometimes back and shoulders but wasn't sure from what. They would itch horribly just like now. Been eating gluten all my life only recently like past month have I developed bloating, pain, gas, etc. Went to Dr. And ran blood test and diagnosed. I was going to post a pic of it, but not sure how lol

trents Grand Master
trents
Posted

Just type the test results in a new window. There is a very short time window for editing a post (for security reasons) and that is now past for your original post. Make sure you include the reference range for negative vs. positive for each test as there is no industry standard. Each lab develops their own. Did your physician discuss with you a follow-up endoscopy with biopsy to confirm the serum antibody tests? This is the normal process unless your antibody scores are very high.

Scott Adams Grand Master
Scott Adams
Posted

This article has some detailed information on how to be 100% gluten-free, so it may be helpful:

   and this one may be helpful:

 

  • 2 weeks later...
trying2heal Newbie
trying2heal
Posted
  • Author
On 8/29/2023 at 5:24 PM, trents said:

Just type the test results in a new window. There is a very short time window for editing a post (for security reasons) and that is now past for your original post. Make sure you include the reference range for negative vs. positive for each test as there is no industry standard. Each lab develops their own. Did your physician discuss with you a follow-up endoscopy with biopsy to confirm the serum antibody tests? This is the normal process unless your antibody scores are very high.

Thank you for taking the time to reply. Turns out I was diagnosed with cholinergic uticaria. A little gift courtesy of celiacs disease. It causes extremely itchy stinging hives when you're body temperature raises and you sweat. The body sends out a histamine response and it's pretty miserable. I take Zyrtec and make sure to try to cool down quickly. It's made exercise quite difficult lately as you can imagine, but it seems to be calming down some.

On 8/30/2023 at 10:29 AM, Scott Adams said:

This article has some detailed information on how to be 100% gluten-free, so it may be helpful:

   and this one may be helpful:

 

Thank you very much for these informative articles!

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    • Jess270
      Bitters for digestion?

      By Jess270 · Posted

      This sounds to me like histamine intolerance. Some foods have more or less histamine. processed or aged meats, fermented food like yoghurt or kimchi and bread (yeast), spinach, eggplant and mushroom are high in histamine. Other foods like tomatoes are histamine liberators, they encourage your mast cells to release histamine, which can also trigger the reactions you describe, flu like symptoms, joint pain, urinary tract irritation, rash, stomach upset, nausea, diarrhoea & fatigue. I had liver pain like you describe, as part of the intolerance is usually a sluggish liver that makes processing all the histamine difficult. There are multiple possible root causes of histamine intolerance, usually it’s a symptom of something else. In my case, leaky gut (damaged gut wall)caused by undiagnosed celiac, but for others it’s leaky gut caused by other things like dysbiosis. Some people also experience histamine intolerance due to mould exposure or low levels of DAO (the enzyme that breaks down histamine in the gut). I’d try a low histamine diet & if that doesn’t improve symptoms fully, try low oxalate too. As others have suggested, supplements like vitamin d, b, l-glutamine to support a healthy gut & a good liver support supplement too. If you’re in a histamine flare take vitamin c to bowel tolerance & your symptoms will calm down (avoid if you find you have oxalate intolerance though). Best of luck 
    • trents
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      By trents · Posted

      @GeoPeanut, milk is one of the better sources of iodine. Iodine is known to exacerbate dermatitis herpetiformis. Many people find that a low iodine diet helps them avoid dermatitis herpetiformis outbreaks. So, maybe the fact that you have limited your dairy intake of late is helping with that.
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      Vaccines

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    • trents
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      Welcome to the forum, @KRipple! Sorry to hear of all your husband's health problems. I can only imagine how anxious this makes you as when our spouse suffers we hurt right along with them. Can you post the results from the Celiac blood testing for us to look at? We would need the names of the tests run, the numeric results and (this is important) the reference ranges for each test used to establish high/low/negative/positive. Different labs use different rating scales so this is why I ask for this. There aren't industry standards. Has your husband seen any improvement from eliminating gluten from his diet? If your husband had any positive results from his celiac blood antibody testing, this is likely what triggered the consult with a  GI doc for an endoscopy. During the endoscopy, the GI doc will likely biopsy the lining of the small bowel lining to check for the damage caused by celiac disease. This would be for confirmation of the results of the blood tests and is considered the gold standard of celiac disease diagnosis. But here is some difficult information I have for you. If your husband has been gluten free already for months leading up to the endoscopy/biopsy, it will likely invalidate the biopsy and result in a false negative. Starting the gluten free diet now will allow the lining of the small bowel to begin healing and if enough healing takes place before the biopsy happens, there will be no damage to see. How far out is the endoscopy scheduled for? There still may be time for your husband to go back on gluten, what we call a "gluten challenge" to ensure valid test results.
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