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Are These Celiac-Related?

Marie1976

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Marie1976 Enthusiast
Marie1976
Posted

My stomach problems are what led me to the doctor in the first place. My blood tests say I have celiac, and I'm getting an endo on Thursday to confirm the diagnosis.

Now I am having sinus headaches for the last couple weeks, is this possibly celiac-related? And will they postpone my endo if I'm having sinus issues? (I'm now at the point where I want to get the endo over with and start the gluten free diet because I've been so miserable.)

My other problem is that my legs have been itching so bad that I'm getting bruises from scratching. And I'm getting blister-like bumps on my fingers. Is this dermatitis herpetiformis? (Don't know if I spelled that right.) For some reason I was under the impression that celiacs have gastric problems OR skin problems. Is it possible to have both?

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maryphyl Newbie
maryphyl
Posted

My stomach problems are what led me to the doctor in the first place. My blood tests say I have celiac, and I'm getting an endo on Thursday to confirm the diagnosis.

Now I am having sinus headaches for the last couple weeks, is this possibly celiac-related? And will they postpone my endo if I'm having sinus issues? (I'm now at the point where I want to get the endo over with and start the gluten free diet because I've been so miserable.)

My other problem is that my legs have been itching so bad that I'm getting bruises from scratching. And I'm getting blister-like bumps on my fingers. Is this dermatitis herpetiformis? (Don't know if I spelled that right.) For some reason I was under the impression that celiacs have gastric problems OR skin problems. Is it possible to have both?

I don't know about your sinus headaches but it is definitely possible to have both skin and innards troubles, I do. mary

eatmeat4good Enthusiast
eatmeat4good
Posted

Yes, you can have gastrointestinal and DH if you have Celiac. I have all 3: Gastrointestinal, Dermatitis Herpetiformis, and Neurological problems if I get any gluten. The skin sores take the longest to resolve.

Marie1976 Enthusiast
Marie1976
Posted
  • Author

OK thanks. I don't know why I thought it would be one or the other - skin problems or GI problems. (Maybe because having both isn't fair? Ha ha.)

The other new symptom I've had lately is my eye keeps twitching, which is weird and annoying. Don't know if that's celiac or something else wrong with me.

I have been making a conscious effort to eat gluten to prepare for the test. Maybe all the extra gluten is causing more symptoms to crop up? That's the only explanation I can come up with...

eatmeat4good Enthusiast
eatmeat4good
Posted

Yes, that very well could be. The eye twitching would be neurological...so you could have symptoms in all three categories...watch for clumsiness, anxiety, depression, and be aware they can be Celiac too. And if you don't test positive..just remember gluten intolerance is just as serious. I wouldn't want you to miss getting relief from being gluten free just because you don't test out as a Celiac. A lot of us here don't. The longer you are on gluten, the more you can expect to have more symptoms. I hope they stop for you soon and you can get back to healing yourself.

Marie1976 Enthusiast
Marie1976
Posted
  • Author

Yes, that very well could be. The eye twitching would be neurological...so you could have symptoms in all three categories...watch for clumsiness, anxiety, depression, and be aware they can be Celiac too. And if you don't test positive..just remember gluten intolerance is just as serious. I wouldn't want you to miss getting relief from being gluten free just because you don't test out as a Celiac. A lot of us here don't. The longer you are on gluten, the more you can expect to have more symptoms. I hope they stop for you soon and you can get back to healing yourself.

So the blood tests could say positive for celiac but if the biopsy is negative, does that mean it's intolerance and not celiac? I'm confused...

I'm starting to see the connection between eating gluten and not feeling well, so I'm going to go gluten free right after the test Thursday. (Do you know how long it usually takes to get the biopsy results?)

I have had anxiety/depression for a long time. I will be so happy if cutting gluten helps with that. :)

eatmeat4good Enthusiast
eatmeat4good
Posted

Sorry if I confused you. I didn't mean to. The way I understand it, a positive test is postive for Celiac no doubt about it. BUT if you test negative on blood and or biopsy then you might be in the percentage who do not test postive but still react to gluten whether it is Celiac or Gluten Intolerance.

I never did the testing, except the food challenge and that was answer enough for me. I'm just relating what I have read about the testing not being 100% accurate in picking up and diagnosing all Celiacs. But a positive is a postive. Don't know how long the test results take to get back. It probably depends on the lab.

Oh yes, anxiety and depression can sometimes be eliminated very quickly by going gluten free. I hope this happens to you. It was true for me.

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Debbie B in MD Explorer
Debbie B in MD
Posted

Yes, you can have gastrointestinal and DH if you have Celiac. I have all 3: Gastrointestinal, Dermatitis Herpetiformis, and Neurological problems if I get any gluten. The skin sores take the longest to resolve.

I'm 3 for 3 also. Lucky us eatmeat4 good. My skin is a problem that hasn't resolved yet from being gluten free for 3 months, but I am still having some neuro issues (burning, tinglung muscles) from my lunchmeat gluttening fiasco almost 2 weeks ago. It is improving, but not gone yet.

Marie1976 Enthusiast
Marie1976
Posted
  • Author

Thanks everybody! Endo tomorrow -- wish me luck. :(

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    • knitty kitty
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      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
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    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
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      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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