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How Many Have Gi Symptoms With Dh

Flasaltwater

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Flasaltwater Apprentice
Flasaltwater
Posted

How many have both? I have both. I have all the symptoms Anemia, Diarhhea, Gas, Bloating, Lactose intolerance, look at my signature. I also have the terrible rash. I was reading that its rare to have GI symptoms and DH am I just weird? or is this more common now or maybe I have something different. How many of you have both?

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GFreeMO Proficient
GFreeMO
Posted

I have the exact same as you. I have both.

Flasaltwater Apprentice
Flasaltwater
Posted
  • Author

I have the exact same as you. I have both.

Did you get a positive diagnosis? I'm scared, I go to the derm Monday to get Biopsy. I'm worried im going to hit another brick wall and not get a proper diagnosis with what ever it is I have. I've pretty much ruled out most other auto imune diseases for now as this is the one that I carry most of the symptoms for.

Thanks for posting

Bubba's Mom Enthusiast
Bubba's Mom
Posted

Over the years I've had a long list of symptoms. It seems like they move around from time to time? Most recently my symptoms were GI, but at the same time I've had what I thought were bug bites or something on my back, arms, and legs. They're just several in each area and itch like mad! They don't heal because I scratch them until they open. They don't look like the pics blisters I've seen that are labeled DH.

I hope you get the answers you're looking for. Not knowing is maddening.

GFreeMO Proficient
GFreeMO
Posted

Did you get a positive diagnosis? I'm scared, I go to the derm Monday to get Biopsy. I'm worried im going to hit another brick wall and not get a proper diagnosis with what ever it is I have. I've pretty much ruled out most other auto imune diseases for now as this is the one that I carry most of the symptoms for.

Thanks for posting

I had DH on my knees and chest for several years before my GI issues. Now I have both when glutened. The DH is very minor compared to what it use to be though.

eatmeat4good Enthusiast
eatmeat4good
Posted

I have gastrointestinal problems and DH in addition to neurological problems when glutened. The neurological is brain fog, anxiety, depression in the form of despair, and sometimes uncoordination and balance issues. DH breaks out first then my stomach and guts go rolling and then I feel like a zombie stoned on gluten...just from trace gluten. god...don't know how I ever ate it every day.

ravenwoodglass Mentor
ravenwoodglass
Posted

I had DH for literally years before my GI issues were anything that wouldn't be considered normal for a kid. I did however have severe joint and muscle pain but doctors attributed it to congenital leg and foot defects. I had surgery but it didn't relieve the pain but did allow me to walk more normally, at least until ataxia set in. I did have C a lot as a child from a young age but it wasn't until after I had my children that the more typical D set in.

Celiac can effect many organs and presentation can differ for people.

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pricklypear1971 Community Regular
pricklypear1971
Posted

I had stomach issues 15+ years ago. Didn't get DH until 2 years ago. now I don't have stomach issues - but do have vitamin/mineral deficiencies so I know it's affected. I get neurological/depression/anxiety symptoms in addition to DH and flu-like symptoms.

Lately I've been having some major gas - which is odd because it wasn't that bad before going gluten-free. I'm wondering if it's all the vitamins... Because it happens before I eat

anything in the morning.

If it's dairy that's just too bad. I'm not giving up the tiny bit I'm eating. Can't pinpoint the gas otherwise.

ravenwoodglass Mentor
ravenwoodglass
Posted

Lately I've been having some major gas - which is odd because it wasn't that bad before going gluten-free. I'm wondering if it's all the vitamins... Because it happens before I eat

anything in the morning.

Have you tried taking your vitamins with a meal? That might help and some of them are better absorbed when you take them with food.

pricklypear1971 Community Regular
pricklypear1971
Posted

I do take them with a meal - except the B12 that is chewable. I take it a little later.

Maybe it's just a stage. I don't know..,sometimes it isn't worth worrying about....

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  • Posts

    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      @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.
    • captaincrab55
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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
      High DGP-A with normal IGA

      By knitty kitty · Posted

      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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