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

My Celiac Problem

stephen11

By stephen11
in Coping with Celiac Disease

Recommended Posts

stephen11 Newbie
stephen11
Posted

I am having a terrible time with my celiac disorder. I am trying to eat all the right food the doctors say that I should be eating but the problem continues. Hourly I have uncontrollable gas which is most embrassing for others to hear while you are at work. I also have ever 2 or 3 days frequent bowel loose problems even when I am walking down the street, which can cause my pants and underwear to be a mess. I take some over the counter stuff for it, to relive the problem temporay but I just can't do it every day. What am I going to do.. I am also concerned that this might lead (when I get older) to more medical problems than I am having now. :(B)

I am writing this e-mail because I want to hear from others who have the same problem and professionals who have study the situation. Is this any doctor out there that might give me some advise. Anyone having any quick solution idea's would be great too. :):D

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

Celiac.com Sponsor (A8-M):


nettiebeads Apprentice
nettiebeads
Posted
I am having a terrible time with my celiac disorder.  I am trying to eat all the right food the doctors say that I should be eating but the problem continues. Hourly I have uncontrollable gas which is most embrassing for others to hear while you are at work.  I also have ever 2 or 3 days frequent bowel loose problems even when I am walking down the street, which can cause my pants and underwear to be a mess.  I take some over the counter stuff for it, to relive the problem temporay but I just can't do it every day.  What am I going to do..  I am also concerned that this might lead (when I get older) to more medical problems than I am having now.  :(  B)

I am writing this e-mail because I want to hear from others who have the same problem and professionals who have study the situation.  Is this any doctor out there that might give me some advise.  Anyone having any quick solution idea's would be great too.  :)  :D

<{POST_SNAPBACK}>

Well, I'm not a dr, but I've had celiac disease for 9 years. You really didn't give much info - How long sick before dx, extent of damage, how long gluten-free? The results of going gluten-free vary w/everyone. Depends on the variables I just mentioned. And also, are you truly gluten-free? No hidden sources that you thought were okay, but not? Still w/ milk (celiac disease causes damage to the villi and makes the villi unable to produce lactase to digest milk products) - Have you checked any supplements you take? cosmetics, hair products, meds? Is your kitchen gluten-free? The healing process takes time, remember you didn't get damaged all in one night, so the reversing of the damage doesn't happen in one night. Hang in there!

jenvan Collaborator
jenvan
Posted

i second nettiebeads--give us some more info...

tarnalberry Community Regular
tarnalberry
Posted

Yep, more information would be good.

* How long have you been gluten-free?

* Are you certain that you are completely gluten free, having also eliminated hidden sources and cross-contamination risks?

* Do you have any other complicating medication conditions?

* Have you been tested for vitamin/mineral deficiencies?

* Have you been tested for other food allergies or food intolerances?

* Are you lactose intolerant?

* Are you on any medications or supplements?

stephen11 Newbie
stephen11
Posted
  • Author

Ok here is some more information.

I think that I have only had it for about a year now. I guess that getting on a Gluten Free diet might be the answer but I take a lot of other medicines and I think that they might be causing the celiac. I know you are probably asking what med's do I take, I don't have the list with me but I could come back tomorrow and give you the list of med's I take. I think that the med's that I am taking are causing the problem more than anything else. Does anyone think that this is possible.

If it isn't the problem, then I would also need to figure out how I could eat only a gluten free diet. I don't even know what a gluten free diet is, What does the diet concest of. What can you and can't you eat. I have cut out many things from my diet and I still have the problem. I wish I knew where I could start. One thing that I don't eat is milk products and wheat bread.

Any more advise anyone could give me would be very my apprecaited.

Thank you, Stephen.

jenvan Collaborator
jenvan
Posted

Stephen-

hey there... i would say that your continuing symptoms--which sound severe--could be pointing at potential gluten still in your diet. did you know gluten can be not only in food, but in medications, over the counter drugs and in your personal care products--shampoo. lotions etc? you will need to ck all of those--until you do, you can't be assured you are gluten-free. go here to see a helpful list of the safe and forbidden foods/ingredients on the gluten-free diet: https://www.celiac.com/st_main.html?p_catid=12 read them, print them off, carry them with you if need be when you are shopping etc. i would try not to eat out at restaurants either at this point, until you get the hang of the diet. if you are truly gluten-free, i think you should notice some improvement in your symptoms.

i would first figure out if you are gluten-free--and begin being so if you aren't. then if problems persist, you could look into other food intolerances/allergies and other disorders. being contaminated when you think you are gluten-free can be pretty common. do this work up front and you should notice at least some improvements initially. what you are taking to aleviate your symptoms may be making it worse. do let us know what you take so we can try and help.

what do you eat on a typical day? do you eat a lot of processed foods or fresh, whole foods? has anyone ever tried to educate you on this diet? you may want to read 'wheat free, worry free' by danna korn--excellent resource that covers most of the bases on being gluten-free and celiac. there are also some lists compiled of mainstream gluten-free foods.

there's some more questions for you :) try to be hopeful--i'm sure this board will help you figure some things out...

Rachel--24 Collaborator
Rachel--24
Posted
If it isn't the problem, then I would also need to figure out how I could eat only a gluten free diet.  I don't even know what a gluten free diet is,  What does the diet concest of.  What can you and can't you eat.  I have cut out many things from my diet and I still have the problem.  I wish I knew where I could start.  One thing that I don't eat is milk products and wheat bread.

<{POST_SNAPBACK}>

I think you really need to concentrate on your diet and learn how to be 100% gluten-free. Did you do things like get a new toaster, check your shampoo, lotions, etc. Also you need to find out if any of your meds have gluten in them. This is a great place to learn everything you need to know. :)

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

Celiac.com Sponsor (A8-M):


Ursa Major Collaborator
Ursa Major
Posted
One thing that I don't eat is milk products and wheat bread.

Stephen, gluten is not just in wheat, but also in rye and barley, and you can't have oats because they're contaminated with gluten here in North America (they're fine to have in Europe).

Also, what everybody else suggests is good. I know that the diarrhea stopped for me when I stopped getting gluten. You have to be like a detective when eliminating all sources of gluten, reading every label of everything you eat or put on your skin or take internally (like medicines).

aikiducky Apprentice
aikiducky
Posted

Just in case someone from Europe reads this and goes and gets themselves glutened .... oats in all of Europe ARE NOT SAFE. Europe is a big place!!

Pauliina

Idahogirl Apprentice
Idahogirl
Posted

I cannot figure out how lotions and shampoos could end up in your small intestines???? ;)

Rachel--24 Collaborator
Rachel--24
Posted
I cannot figure out how lotions and shampoos could end up in your small intestines????  ;)

<{POST_SNAPBACK}>

Well...it can happen pretty easily. I can give you examples of how it happened to me. I put my lotion all over my face, hands and body. Now I have wheat germ oil all over me. If I sweat it can get into my mouth. If I cut up some fruit and eat it the fruit slices are all contaminated from the lotion on my hands. I also touch my face alot...then touch my food, or subconsiously touch my mouth with my fingers. I get peanut butter on my fingers and lick it off. I make hamburger patties after just showering and putting on lotion etc...now my hamburgers are contaminated. My make up had gluten in it...I would go to the gym and into the sauna...the sweat would pour off my face and of course get on my lips and into my mouth..now I have gluten from my make-up and my lotion and my hair products going into my mouth. Also when I cried...my contaminated tears ran into my mouth. All these things can happen without us even thinking about it.

psawyer Proficient
psawyer
Posted
I cannot figure out how lotions and shampoos could end up in your small intestines????  ;)

<{POST_SNAPBACK}>

Lotion on your hands can get ingested when you eat finger food. Shampoo running off your scalp onto your face could enter your mouth in small amounts.

Idahogirl Apprentice
Idahogirl
Posted

Wow! That does make sense. Silly me, I was trying to imagine that somehow it would absorb through my skin! Is it pretty easy to identify? I've checked my lotion, and it doesn't appear to have gluten in it. Would it be listed as ingredients on the Forbidden ingredient list?

fisharefriendsnotfood Apprentice
fisharefriendsnotfood
Posted
Ok here is some more information.

I I think that the med's that I am taking are causing the problem more than anything else.  Does anyone think that this is possible.

<{POST_SNAPBACK}>

No, that is not possible from the extent of my knowledge. Medecation cannot cause Celiac. You have to have the gene, and a trigger. A trigger can be a viral infection, pregnancy (obviously not in your case), stress, and many other things that I'm sure others on this site can tell you. Medication will not make Celiac worse (I think) unless it has gluten in it which is very possible.

Don't worry, you'll get started on the gluten free diet. It is the only way to control your Celiac symptoms. Celiac won't just go away and won't be helped by medication. You'll get a lot of help from this web site and the people on this forum.

Good luck!

-Jackie

Ursa Major Collaborator
Ursa Major
Posted
Silly me, I was trying to imagine that somehow it would absorb through my skin!

Not silly at all, but very true. Here's an example on how fast things get absorbed into your skin:

Somebody wanted to test if garlic gets absorbed into your skin. He crushed a clove of garlic, put it on the floor and stood on it with his bare foot. Within FIVE MINUTES he had garlic breath!

When you put lotion on your skin, where do you think it goes? Right, it absorbs into your skin, and it gets into your bloodstream, too. Are your intestines supplied with blood? Certainly they are. So, if you have gluten in your lotion, it WILL get to your small intestine and damage it!

Also, if you have wheat germ (the most common thing in all natural shampoo) in your shampoo (lotion, soap), it can cause (or make worse) dermatitis herpetiformis (not sure spelling is right). My scalp has always been driving me crazy with itchiness, and I was constantly popping and scratching things off my head. When I changed my shampoo three weeks ago to a gluten free one, the itchiness got a lot better. It's not gone, because it will take a year or two for DH to go away after stopping gluten. But it's not nearly as bad.

So, that is in addition to the problems the previous posters mentioned, which are all valid, too.

Rachel--24 Collaborator
Rachel--24
Posted
When you put lotion on your skin, where do you think it goes? Right, it absorbs into your skin, and it gets into your bloodstream, too. Are your intestines supplied with blood? Certainly they are. So, if you have gluten in your lotion, it WILL get to your small intestine and damage it!

<{POST_SNAPBACK}>

I thought gluten was actually too large to actually be absorbed into the skin?? :unsure:

Ursa Major Collaborator
Ursa Major
Posted
I thought gluten was actually too large to actually be absorbed into the skin??  :unsure:

<{POST_SNAPBACK}>

Well, I haven't heard that. But if that is true, why would just touching my eyes after washing my hands with a soap containing gluten, cause my eyes to swell and itch for a day or two? Or why would washing my hair irritate my scalp so badly? Now I better look it up and find out if it really is too large to be absorbed.

But if it wouldn't be absorbed, why would it be in lotion? If everything else would be absorbed, except for the wheat germ, then you'd end up with a goopy layer of stuff on your skin. I don't think you do.

Ursa Major Collaborator
Ursa Major
Posted

Okay, I did a little research, and this is what I found (emphasis mine).

Wheat germ Oil

Contains: protein, minerals, vitamins E, A & D

Uses: dry cracked skin, eczema, psoriasis, prematurely aged skin, stretch marks. Thick, sticky, some sources say anti-oxidant. Use a 10% dilution

NOTE: often recommended as addition to other oils to increase stability and shelf life. HOWEVER, Sylla Sheppard-Hanger states that "if anything it oxidizes more readily than others. The vitamin E content is low and does not prevent it from oxidizing...if it has been used as an anti-oxidant and worked it is purely because the original wheat germ oil contained synthetic antioxidants commonly added at the source of production."

Also, Wheat Germ Oil can be very dangerous for a person with a severe wheat or gluten allergy. I recently received the following in my email, from a member of the Canadian Celiac Association " Just wanted to mention that wheat germ oil would be harmful to those people who have a wheat allergy, or gluten sensitivity, like Celiac Disease (celiac disease), or the associated disease, Dermatitis Herpitiformus, (DH). Both Diseases are sensitive to the gluten in the wheat germ, and might inadvertently be absorbed through the skin.".

Open Original Shared Link

Rachel--24 Collaborator
Rachel--24
Posted

Everything I've ever read regarding gluten says it CANT be absorbed through the skin. It has to be ingested to cause damage BUT some people may have skin reactions because they are simply sensitive to it... but its not actually being absorbed into the skin and causing intestinal damage. Thats my understanding anyways.

kevsmom Contributor
kevsmom
Posted

You would be surprised at how gluten could get into your system.

Your food needs to be prepared on a clean, sanitary area to avoid cross contamination. No double dipping from the peanut butter or butter containers, etc. because other people could be spreading onto products loaded with gluten. It is better to have your own container marked "Gluten Free".

If you have a pet, make sure that you wash your hands after you feed them or give them a treat.

There really is a lot to learn. This site as been so helpful to me :) . Keep asking questions. Everyone is so helpful and supportive.

It will get easier - knowledge is power!

Ursa Major Collaborator
Ursa Major
Posted
Everything I've ever read regarding gluten says it CANT be absorbed through the skin. It has to be ingested to cause damage BUT some people may have skin reactions because they are simply sensitive to it... but its not actually being absorbed into the skin and causing intestinal damage. Thats my understanding anyways.

<{POST_SNAPBACK}>

Rachel, can't you see that it is the wheat germ OIL that's the problem here? And why wouldn't oil be absorbed into the skin? Anyway, I'm not sure if it gets to the intestine, but what does it matter? It's not just our intestines that are allergic to gluten, but ALL of us! It's just there where the damage is visible. You can't see the damage as easily elsewhere. But it's there.

If the gluten would only be damaging the intestines, we should only have gastrointestinal pain and problems. But you know as well as I do that, when glutened, we will have cognitive and mood problems (as it's affecting the brain), I will have terrible joint and muscle aches, nightsweats, nightmares, skin problems and many more. Meaning that obviously the gluten gets into the bloodstream and spreads throughout the body.

Archived

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

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


  • Member Statistics

    • Total Members
      131,549
    • Most Online (within 30 mins)
      7,748
    Blough
    Newest Member
    Blough
    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.