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Itchy burning scalp/chest sores, etc

DiBruen
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DiBruen Newbie
DiBruen
Posted

Hi I haven't been seen by a doctor what specialist does celiac and thyroid tests? What's the cost as I am uninsured waiting on that... 

I have sores that are itchy like bugs under my skin on my scalp they appear constantly some hard large some tiny and they all scab over some weep constant... My chest they are bumpy and if scratched red open and ckear liquid. It's miserable! What can I use to help the itch and heal them? I've tried hydrocortisone, benadryl cream, aloe wuth menthol, neosporin, lubruderm, specialty soaps with natural ingredients... I had a culture test it's negative for bacterias... I have all the symptoms of celiac and tgrydoid autoimmune... 40 years plus diagnosed IBS atleast thought it was. Ivr been miserable for years. Fatigue brain fog body pain bloat gas and weight gain of 40 lbs in ladt year 25 lbs year before. 

Any suggestions? 

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trents Grand Master
trents
Posted

One of the classic manifestations of celiac disease is an autoimmune skin condition called dermatitis herpetiformis or DH. You also describe many other symptoms which are classic for celiac disease such as GI distress, brain fog and other neurological problems.

You need to get tested for celiac disease. The first stage of testing is checking for serum antibodies associated with celiac disease. Here is a primer: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/ The second stage of testing is an endoscopy with biopsy of the small bowel to look for damage to the villi. You need to be eating regular amounts of gluten daily (equivalent of two slices of wheat bread) for at least 6-8 weeks before the blood test and at least 2 weeks before the biopsy. So don't try to go gluten free before testing is finished.

Scott Adams Grand Master
Scott Adams
Posted

Welcome to the forum! I agree and now, before trying a gluten-free diet, would be a great time to get a celiac disease blood screening. 

Depending on your results they may also want to do a endoscopy to confirm celiac disease. If for some reason you test negative for it, then you may still have non-celiac gluten sensitivity, and could try out a gluten-free diet to see if it helps.

  • 4 months later...
murray7400 Newbie
murray7400
Posted
On 9/7/2021 at 11:22 AM, Scott Adams said:

Welcome to the forum! I agree and now, before trying a gluten-free diet, would be a great time to get a celiac disease blood screening. 

Depending on your results they may also want to do a endoscopy to confirm celiac disease. If for some reason you test negative for it, then you may still have non-celiac gluten sensitivity, and could try out a gluten-free diet to see if it helps.

Has anyone experienced itchy skin with no visible rash? 

Scott Adams Grand Master
Scott Adams
Posted

I used to have a dermatitis herpetiformis rash on my hand, and recall that the itchiness would always happen before the rash appeared.

DiBruen Newbie
DiBruen
Posted
  • Author
4 hours ago, murray7400 said:

Has anyone experienced itchy skin with no visible rash? 

Same as Scott, itching always starts before a rash or sores appear. The ones I have are pretty severe on my scalp......bad on chest. Itch and pain is constant. I'm waiting on approval for medi-cal or covered California.... It's a waiting game for everything here. 

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  • Posts

    • knitty kitty
      Feeling ill

      By knitty kitty · Posted

      Welcome to the forum! Keep in mind that if you quit eating gluten before all testing is done, you may have inaccurate, possibly false negative, test results.  When you stop eating gluten, your body stops making the antibodies which are measured in the blood tests.  Stopping gluten before an endoscopy may make the intestinal damage harder to detect, and a false negative biopsy may result.  As uncomfortable as it is, finish all testing before going gluten free.  
    • Scott Adams
      Feeling ill

      By Scott Adams · Posted

      Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:    
    • Scott Adams
      fed up italian

      By Scott Adams · Posted

      Your feelings are completely valid, and I want to commend you for advocating for yourself despite the initial resistance from your doctor. Navigating a new celiac diagnosis can feel overwhelming, especially when you're adjusting to such a big lifestyle change. It’s natural to grieve the loss of your old eating habits and to feel frustrated by the constant label-reading and vigilance required. But please know that you are not alone, and many others have walked this path and come out stronger on the other side. Healing takes time, and while the brain fog, fatigue, and bowel symptoms can be discouraging, they often improve as your body begins to recover. It’s great that you’ve hired a dietitian—that’s a big step in supporting your healing journey and ensuring you’re getting the nutrients your body needs to rebuild. Remember, each small step you take is progress, even if it doesn’t feel like it right now. It’s okay to feel sad and angry, but also try to give yourself credit for your strength in facing this. The fact that you pushed for answers shows how resilient you are. While the road ahead may have challenges, many people find that over time, they feel better than they ever imagined possible once their gut begins to heal. You’ve got this, and the celiac community is here to support you every step of the way. If you have time, this book was published on Celiac.com's and you might find it helpful: Also, this article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):    
    • trents
      Feeling ill

      By trents · Posted

      Welcome to the forum, @Whyz! By "half way to being diagnosed" I assume you mean you have had the blood antibody testing done but not the gastroscopy with biopsy. Is this correct? Were the results of your blood work positive for celiac disease?
    • trents
      My 5 months of Struggle

      By trents · Posted

      Three days of no gluten is not likely to have much impact on serum antibody test results. I have more concern over exactly what test or tests were ordered. When you get the results back, please post them including the reference ranges for the tests for negative vs. positive. What country are you in? Do you have much choice in what doctors you see? Sounds like it might be a good idea to seek out another physician who knows what they are doing in this area of disease diagnosis. At any rate, you have the link I shared above outlining the various tests that can be run so that might be a resource you could share with a physician.
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