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How Much Is Too Much?


momtopa

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momtopa Rookie

Ok...I was diagnosed with Celiac in October. Now, I don't get severely sick with diarrhea and stomach cramps that kill me all the time. I'm wondering that since I don't feel THAT sick, do I really need to worry so much about contamination or accidentally getting a little bit of gluten if I can put up with the excess gas & bloating for a little while?

My blood test, tTG IgA was 49 and my biopsy says the findings are consistent with celiac sprue (focal mild villous blunting) My doctor's office didn't know my marsh level. I have a copy of the surgical pathology report, and it's not listed. If I get a little gluten and don't get sick, am I still okay or is it damaging my villi without showing severe symptoms?

I plan on asking my doctor next visit, but I'm not exactly thrilled with him and don't know that I trust him as he talks about it being an allergy too and remember he's the one who laughed at me when I asked him if make up was safe, and told me only if I ate it.


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Wolicki Enthusiast

Ok...I was diagnosed with Celiac in October. Now, I don't get severely sick with diarrhea and stomach cramps that kill me all the time. I'm wondering that since I don't feel THAT sick, do I really need to worry so much about contamination or accidentally getting a little bit of gluten if I can put up with the excess gas & bloating for a little while?

My blood test, tTG IgA was 49 and my biopsy says the findings are consistent with celiac sprue (focal mild villous blunting) My doctor's office didn't know my marsh level. I have a copy of the surgical pathology report, and it's not listed. If I get a little gluten and don't get sick, am I still okay or is it damaging my villi without showing severe symptoms?

I plan on asking my doctor next visit, but I'm not exactly thrilled with him and don't know that I trust him as he talks about it being an allergy too and remember he's the one who laughed at me when I asked him if make up was safe, and told me only if I ate it.

No it's not ok. Think of it like this: gluten is poison to your intestines. Even though you can't "feel it," it is damaging your intestines.

txplowgirl Enthusiast

If you keep eating ANY gluten no matter how much you run a greater risk of developing a lot of health problems including cancer. You are damaging your insides.

momtopa Rookie

So, does the amount I eat have anything to do with the amount of damage that's being done?

I feel that because I don't have the real bad symptoms I could be damaging them and not even realizing it :-(

mushroom Proficient

So, does the amount I eat have anything to do with the amount of damage that's being done?

I feel that because I don't have the real bad symptoms I could be damaging them and not even realizing it :-(

Unfortunately, it's not just your digestive tract that can be damaged by gluten. You can be doing neurological damage, disrupting your thyroid function, setting in motion a whole cascade of other autoimmune diseases. So the amount of damage to your intestinal tract or the severity of your GI symptoms really has little to do with the mischief that gluten can manufacture in your body. Get rid of it! Any amount of gluten can cause you harm.

GFinDC Veteran

You can do damage without feeling it. There are some people who have silent celiac and don't have obvious symptoms. But they still have damage going on.

Takala Enthusiast

Try to eat as clean a diet as possible. You don't realize how much better overall you can feel until you clean up your diet to be actually gluten free. I'm not a blatant reactor to small amounts of gluten, but instead I get neurological symptoms similar to MS, and flares of arthritis. I have a lot of damage to certain parts of my spine, I live in a state of chronic low grade injury because of another auto immune condition, (I'm aging, athletic and I pay for it.... ) and a slow but still undiagnosed thyroid, and all of this could have been avoided if I had been diagnosed properly decades ago instead of having to figure it out myself in my mid forties. (the neuro who ran the brain scan showing I had bright spot lesions did not recognize this as an indicator, lied to me about other test results which contradicted her misdiagnosis- ALWAYS get copies of your test results- and told me that diet had NOTHING to do with anything I had even when I told her I had been grain free for over a year at that point and it had decreased my symptoms.)

You don't want to develop any of the other complications that can go along with this condition. It took a long time to get to where I could feel certain parts of my body again and didn't have my hands so numb I couldn't type.


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momtopa Rookie

hmmmm, I've had migraines for many years. I wonder if going gluten free will help those too. Oh~That would be awesome!

mysecretcurse Contributor

Any is too much!

mamaw Community Regular

momtopa

Our migraine headaches really improved since being gluten-free. Somewhere I lost you personal info through the holidays. I'm so sorry. But I am meeting on Jan13, 2010 to meet another new person at the McDonald's at the greater butler shopping center on Rt 8 south. 2:00 afternoon . If you would like to join us please let me know. Bring a tablet for notes & any questions you may want answered....

hope to meet you at that time.

blessings

mamaw

T.H. Community Regular

I actually think people with the 'silent celiacs,' where you get no symptoms, have it worse, in some ways! There's no real way to tell us that we're getting the gluten, right? It's real obvious that we're hurting ourselves if we get the runs or stomach pain every time, but if we don't?

Hard to believe just a teeny bit can do it to you, yes?

I can tell you, however, what my doctor told me (he is a GREAT GI. He pretty much specializes in Celiac. My own doc said he thought this guy was cutting edge on the whole celiac thing. He's awesome).

1. Genetically, celiac people are more prone to sensitivities, allergies, and intolerances to foods.

2. We're more prone to react to dyes, additives, and preservatives in our foods.

3. When we eat Genetically modified foods, we're more likely to develop allergies to OTHER foods.

4. If you have been diagnosed with celiac, especially at an older age, you are more at risk for vitamin deficiencies, osteoporosis. You're also more likely to develop other auto-immune disorders, like diabetes, hashimoto's, Krohn's disease, and hypothyroidism.

For me, he had me tested to pieces for vitamins and everything else. I found out I'm allergic to sugar cane, soy, dairy, eggs....all the things I've been eating all the time! I'm even allergic to coffee! I haven't had hives or any other 'allergy' symptom, though.

I ended up on an elimination diet, where you write down everything you notice, from migraines to grumpiness, along with every ingredient, and then they help you make a diet that avoids anything that seems to affect you. (whether allergy or not)

The only reason I mention this is that...it's been amazing. Going gluten free didn't cure everything for me, but avoiding gluten AND the other foods has been, honestly, miraculous. Depression, carpal tunnel, foot problems, a bad back that aches all the time, ear aches and joint aches: all gone. I even feel happier - if I eat certain foods, it simply makes me crabby. That's all - but even my husband is noticing now. I'll have a bad day and he'll say: did you eat any of such and such today? And I usually have.

Seriously, even just looking at a diet that avoids the 8 majory allergens might be worth the try. Can't really hurt, and right now, when you have to adjust the diet anyway, it might be a great time to do it!

Take care, and good luck!

Shauna

hmmmm, I've had migraines for many years. I wonder if going gluten free will help those too. Oh~That would be awesome!

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    • trents
      This article does not address migraines at all.  Yes, red wine and sulfites are often mentioned in connection with migraine triggers. With me, any kind of alcoholic beverage in very modest amounts will reliably produce a migraine. Nitrous oxide generators, which are vaso dialators, also will give me migraines reliably. So, I think most of my migraines are tied to fluctuations vascular tension and blood flow to the brain. That's why the sumatriptan works so well. It is a vaso constrictor. 
    • knitty kitty
      Excessive dietary tyrosine can cause problems.  Everything in moderation.   Sulfites can also trigger migraines. Sulfites are found in fermented, pickled and aged foods, like cheese.  Sulfites cause a high histamine release.  High histamine levels are found in migraine.  Following a low histamine diet like the low histamine Autoimmune Protocol diet, a Paleo diet, helps immensely.    Sulfites and other migraine trigger foods can cause changes in the gut microbiome.  These bad bacteria can increase the incidence of migraines, increasing histamine and inflammation leading to increased gut permeability (leaky gut), SIBO, and higher systemic inflammation.   A Ketogenic diet can reduce the incidence of migraine.  A Paleo diet like the AIP diet, that restricts carbohydrates (like from starchy vegetables) becomes a ketogenic diet.  This diet also changes the microbiome, eliminating the bad bacteria and SIBO that cause an increase in histamine, inflammation and migraine.  Fewer bad bacteria reduces inflammation, lowers migraine frequency, and improves leaky gut. Since I started following the low histamine ketogenic AIP paleo diet, I rarely get migraine.  Yes, I do eat carbs occasionally now, rice or potato, but still no migraines.  Feed your body right, feed your intestinal bacteria right, you'll feel better.  Good intestinal bacteria actually make your mental health better, too.  I had to decide to change my diet drastically in order to feel better all the time, not just to satisfy my taste buds.  I chose to eat so I would feel better all the time.  I do like dark chocolate (a migraine trigger), but now I can indulge occasionally without a migraine after.   Microbiota alterations are related to migraine food triggers and inflammatory markers in chronic migraine patients with medication overuse headache https://pmc.ncbi.nlm.nih.gov/articles/PMC11546420/  
    • trents
      Then we would need to cut out all meat and fish as they are richer sources of tyrosine than nuts and cheese. Something else about certain tyrosine rich foods must be the actual culprit. 
    • Scott Adams
      I agree that KAN-101 looks promising, and hope the fast track is approved. From our article below: "KAN-101 shows promise as an immune tolerance therapy aiming to retrain the immune system, potentially allowing safe gluten exposure in the future, but more clinical data is needed to confirm long-term effects."  
    • Scott Adams
      Thank you so much for having the courage to share this incredibly vivid and personal experience; it's a powerful reminder of how physical ailments can disrupt our fundamental sense of self. What you're describing sounds less like a purely psychological body dysmorphia and more like a distinct neurological event, likely triggered by the immense physical stress and inflammation that uncontrolled celiac disease can inflict on the entire body, including the nervous system. It makes complete sense that the specific sensory input—the pressure points of your elbows on your knees—created a temporary, distorted body map in your brain, and the fact that it ceased once you adopted a gluten-free diet is a crucial detail. Your intuition to document this is absolutely right; it's not "crazy" but rather a significant anecdotal data point that underscores the mysterious and far-reaching ways gluten can affect individuals. Your theory about sensory triggers from the feet for others is also a thoughtful insight, and sharing this story could indeed be validating for others who have had similar, unexplainable sensory disturbances, helping them feel less alone in their journey.
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