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Does This Have To Do With Gluten


jwhitman63

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jwhitman63 Newbie

First off let me say that I am new to this board, and I am so happy to have a place to go to ask this question. I was diagnosed with gastroparesis several years ago and as a result I was diagnosed with celiac...however it was through blood tests, one was a "weak" positive and the other was a negative. I know that when I stay away from the gluten I do feel better, so I have been operating under the assumption that I have a sensitivity, but not a full blown allergy..until lately. The last couple of days I have noticed that when I consume gluten (in the form of bread or muffin etc) that after eating it I get the feeling of needing to constantly clear my throat and maybe that the inside of my throat is swelling up a bit, not bad, but noticeable, I also notice that I become hoarse. The other thins is that when I eat those items I get almost like a canker sore on the roof of my mouth, but it goes away by the next day. I also become itchy all over. Last night after eating a slice of toast it felt like my lips were swollen and tingling. I know this sounds stupid, but are these signs that my sensitivity is getting worse? or could it be something else? Thank you so much


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mushroom Proficient

Hello. and welcome.

I suppose my first question for you is, why is a diagnosed celiac still eating gluten? Obviously you (or the doctor?) did not really believe in the diagnosis. although it appears that you did trial a gluten free diet if you say you felt better off it.. And by the way, celiac is not an allergy to gluten, it is an autoimmune response to it. If you have been continuing to eat a full gluten diet I would have the celiac tests repeated. Maybe they would give a more emphatic result which would convince you that gluten is not good for you. There are more than two tests in a celiac panel, which consists of the following:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Deamidated Gliadin Peptide (DGP) IgA and IgG

Total Serum IgA

That being said, the symptoms of throat closing and swelling, and the itching (any hives?) could be an allergic reaction to wheat. I think you need to go to your doctor and get the celiac panel run, and also be tested for wheat allergy. Do this right away, for two reasons. First, you need to be consuming gluten for the blood tests to be accurate, and secondly, an allergic reaction with swelling of the throat is dangerous and life-threatening.

jwhitman63 Newbie

Thanks, I guess the issue has been that at the time I was having trouble with what was diagnosed as gastroparesis and and as a result I was having malabsorbtion issues. It was my primary care doctor who did the blood test for celiac and that one came back as what he termed a weak positive, my GI was so busy trying to get my other stomach issues under control that he didn't even seem to put any value on the celiac idea..but I pushed it and he did another test and that one came back negative...so it was which one to believe?? to be fair though the second tests results, in my opinion, could have been comprimised due to not being able to eat a regular diet. I decided to try a gluten-free diet and as I said I did feel better, but again the other stomach issues were also improving, so I became lax and did return to eating foods that contain gluten (to be honest I never really and still don't understand the whole thing, but I am attempting to learn). I have tried to watch the amounts I consume and I think in my own twisted thinking if I only consumed a little it was okay, but now I know that is not the case. I am calling my doctor in the am and making an appt to get this settled once and for all. I am wondering if the gp and the celiac are one and the same. I did not consume any gluten or wheat today and am feeling better, I also took a benedryl for the itching so that is better. I am just feeling overwhelmed.

Hello. and welcome.

I suppose my first question for you is, why is a diagnosed celiac still eating gluten? Obviously you (or the doctor?) did not really believe in the diagnosis. although it appears that you did trial a gluten free diet if you say you felt better off it.. And by the way, celiac is not an allergy to gluten, it is an autoimmune response to it. If you have been continuing to eat a full gluten diet I would have the celiac tests repeated. Maybe they would give a more emphatic result which would convince you that gluten is not good for you. There are more than two tests in a celiac panel, which consists of the following:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Deamidated Gliadin Peptide (DGP) IgA and IgG

Total Serum IgA

That being said, the symptoms of throat closing and swelling, and the itching (any hives?) could be an allergic reaction to wheat. I think you need to go to your doctor and get the celiac panel run, and also be tested for wheat allergy. Do this right away, for two reasons. First, you need to be consuming gluten for the blood tests to be accurate, and secondly, an allergic reaction with swelling of the throat is dangerous and life-threatening.

GFinDC Veteran

Sounds like you are getting on the right track now though. The blood antibodies tests ar etno 10% accurate, for positive or negative results. They are much more accurate for positives than the are for negative results. So it is always good to go with the positive as benig accurate but not so good to to assume the negative results are acccurate. You could still be positive but the tests may say negtive.

Celaic can affect many of the body organs, not just the intestine. If you search on "celiac associated condition" or "celiac related condition" you will find lists of other autoimmune disease that people with celiac tend to get more often. The thing is, some times people go to their doc for arthritis, or lupus, or fibromyalgia symptoms and are tested and found to have celiac. The symptoms are vary wide ranging and can affect the entire body. Part of those affects can be malabsorption as you mentioned and that can affect the whole body by itself. Some people have no digestive symptoms with celiac at all but are affected in their joints or brain or muscles etc.

If you are feeling better already it's a good bet your body really doesn't like gluten. Since celiac is an autoimmune disease it has to be handled differently than an allergy. The autoimmune reactions can go on for weeks once started. So you really need to avoid all gluten consistently to get the reaction to stop and the antibodies to stop cranking out. A little bit will keep it going. Think of it like a disease, like measles or something. Your body doesn't ignore little tiny invisible measles germs when they invade, it goes after them and kills them right quick. It doesn't take a whole mouthful them to trigger the reaction either.

lemontree1 Rookie

It certainly sounds like an allergy to me. You can ask for a blood allergy test to be sure. I believe that is an IgE test. I have some of the same symptoms and I have a wheat allergy as well as celiac disease. Or you could just not eat the stuff at all. :-)

mushroom Proficient

I am wondering if the gp and the celiac are one and the same. I did not consume any gluten or wheat today and am feeling better, I also took a benedryl for the itching so that is better. I am just feeling overwhelmed.

I think this is quite likely since celiacs are often also diagnosed with gastroparesis and you say that those symptoms improved in the absence of gluten.

Do not be overwhelmed by it - just take it one step at a time. And the first step is the celiac panel testing, and also IgE testing for wheat allergy. Get those done as soon as possible and let us know how the results turn out. Then you can take the next steps and there are plenty of folk here to help you. :)

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    • trents
      Okay, Lori, we can agree on the term "gluten-like". My concern here is that you and other celiacs who do experience celiac reactions to other grains besides wheat, barley and rye are trying to make this normative for the whole celiac community when it isn't. And using the term "gluten" to refer to these other grain proteins is going to be confusing to new celiacs trying to figure out what grains they actually do need to avoid and which they don't. Your experience is not normative so please don't proselytize as if it were.
    • Levi
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    • Lori Lavell
      The body reacts to all grain proteins in all grains from my observation. Call it Gluten, Gliadin, which is what they test for commonly, however, I am Celiac and react with dermatitis herpetiformis to corn and the glutenous protein in it is called Zein. They only test for Gliadin. Testing needs to be updated in my opinion. It only take a small parts per million to continuously create systemic inflammation. This is not productive to healing and all grains contain some for gluten like substance. It's called Molecular Mimicry.
    • Scott Adams
      Thank you for sharing your perspective. It's true that many grains contain proteins that are technically classified as "glutens" (like zein in corn and orzenin in rice), but it's important to clarify that these proteins are not the same as the gluten found in wheat, barley, and rye, which contains gliadin and glutenin. These specific proteins are the ones that trigger an autoimmune response in people with celiac disease. For individuals with celiac disease, the primary concern is avoiding gluten from wheat, barley, and rye, as these are the grains scientifically proven to cause damage to the small intestine. While some people with celiac disease or non-celiac gluten sensitivity may also react to other grains, this is not universal and varies from person to person. For most people with celiac disease, grains like corn and rice are considered safe and are widely recommended as part of a gluten-free diet. That said, you raise an important point about systemic inflammation and individual tolerance. Some people may indeed have sensitivities to other grains or find that eliminating additional grains helps them feel better. However, it’s crucial to differentiate between celiac disease, which requires strict avoidance of wheat, barley, and rye, and other conditions or sensitivities that may involve broader dietary restrictions.
    • trents
      I disagree, Lori. Gluten is a particular protein, not a category of proteins. It is found in wheat, barley and rye. Other cereal grains have proteins that resemble gluten to one degree or another but are not gluten. Gluten is gluten. Avenin is avenin. But yes, it is true, that informally speaking, some have used the term "gluten" to refer to the proteins found in these other cereal grains. It's like the term "kleenex" has come to refer to all facial tissues.
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