Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

How Much Is Too Much?

momtopa

By momtopa
in Coping with Celiac Disease

Recommended Posts

momtopa Rookie
momtopa
Posted

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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Wolicki Enthusiast
Wolicki
Posted

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
txplowgirl
Posted

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
momtopa
Posted
  • Author

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
mushroom
Posted

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
GFinDC
Posted

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
Takala
Posted

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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


momtopa Rookie
momtopa
Posted
  • Author

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
mysecretcurse
Posted

Any is too much!

mamaw Community Regular
mamaw
Posted

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
T.H.
Posted

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!

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,556
    • Most Online (within 30 mins)
      7,748
    Majesticrb
    Newest Member
    Majesticrb
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Taken Seriously

      By Scott Adams · Posted

      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      Looking for a gluten-free roomie in Denver CO

      By Scott Adams · Posted

      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Allergy medication: cetirizine by the HealthA2Z is it gluten free?

      By Scott Adams · Posted

      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      Protein or fat?

      By Scott Adams · Posted

      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • Beverage
      Diagnosed celiac for 1-2 months ago and everything makes me bloated.

      By Beverage · Posted

      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.