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

A Few Questions

SarahAnn92

By SarahAnn92
in Coping with Celiac Disease

Recommended Posts

SarahAnn92 Newbie
SarahAnn92
Posted

I'm turning 18 in a couple weeks, and I have been gluten free for almost a year(in April it will be a year). It was found that I have Celiac Disease. It was found during an endoscopy when the doctor noticed my villi was flat, and a blood test confirmed it.

Back when I was 13, I lost weight down to 64 lbs(I'm fine now, I weigh 133), and I ended up having to get an ileostomy(which I still have). I've always had problems with my GI tract/system. I have juvenile polyposis, and HHT(hht.org for more info). When I was 9 I had to have my colon removed because there was 100s of polyps in it. I had a J-Pouch put in(not an ileostomy). It worked fine for a few years, but then at age 12/13, I lost down to 64 lbs, I couldn't force myself to eat anything(even the thought of food made me want to vomit), I couldn't keep my poop in. The doctors couldn't figure it out. I noticed that poop was leaking out of my vagina area. My dad dismissed it at first, but then it was discovered by a nurse who was putting in a catheter. I then had the ileostomy put in. It was discovered that fistula was the cause of all this!! I'm fine now, and my celiac wasn't discovered until a couple years after that, but I'm just wondering if it's possible the cause of all the stomach issues could have been caused by celiac? I had been eating wheat my whole life(17 years) before it was discovered. I now throw it up if I eat anything with wheat.

Thanks for reading all this lol

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

Celiac.com Sponsor (A8-M):


Peace41 Rookie
Peace41
Posted

I'm turning 18 in a couple weeks, and I have been gluten free for almost a year(in April it will be a year). It was found that I have Celiac Disease. It was found during an endoscopy when the doctor noticed my villi was flat, and a blood test confirmed it.

Back when I was 13, I lost weight down to 64 lbs(I'm fine now, I weigh 133), and I ended up having to get an ileostomy(which I still have). I've always had problems with my GI tract/system. I have juvenile polyposis, and HHT(hht.org for more info). When I was 9 I had to have my colon removed because there was 100s of polyps in it. I had a J-Pouch put in(not an ileostomy). It worked fine for a few years, but then at age 12/13, I lost down to 64 lbs, I couldn't force myself to eat anything(even the thought of food made me want to vomit), I couldn't keep my poop in. The doctors couldn't figure it out. I noticed that poop was leaking out of my vagina area. My dad dismissed it at first, but then it was discovered by a nurse who was putting in a catheter. I then had the ileostomy put in. It was discovered that fistula was the cause of all this!! I'm fine now, and my celiac wasn't discovered until a couple years after that, but I'm just wondering if it's possible the cause of all the stomach issues could have been caused by celiac? I had been eating wheat my whole life(17 years) before it was discovered. I now throw it up if I eat anything with wheat.

Thanks for reading all this lol

My son also turns 18 in a couple of weeks too. And he also has had a medical journey etc...and it is likely the problems u have were because of the Celiac's because it can cause damage to the stomach and bowels, but I am just a newbie to learning about Celiac. My son has just learnt and being prepared that he may too have a gluten intolerance along with a dairy intolerance, so he is preparing that changes again are going to have to be made. He lived a very strict diet for many years and then had a couple of years where he could eat normal again. And he still has some health issues too. We just ordered some really lovely cook books before we found out about me having a gluten intolerance, and they came today and so it looks like those cook books have to go back.

Peace 4 1

plantime Contributor
plantime
Posted

Sad to say, but it is very possible that celiac caused all of your problems. Undiagnosed, a lot of damage gets done. The body begins to attack itself, which could very well be what happened to you. In me, my joints were attacked. In my mom, her entire intestinal tract was attacked.

gluten-freedom Newbie
gluten-freedom
Posted

Wow. You are a trooper! You have been through so much!!!

It is possible that celiac caused these other problems. It is also possible that you simply have had multiple, related conditions. Celiac (untreated) increases our risk of other problems, particularly autoimmune ones and/or digestive ones.

I am so sorry for all you've had to go through. I hope you have a sturdy support system walking with you through this journey!

mushroom Proficient
mushroom
Posted

You have been on a pretty devastating journey in your short life so far. May the rest of it it be easier for you. There is no way of knowing how much gluten was a contributor to your problems, but it is certainly a possibility that it did play a part, as the others have stated. It is interesting that all of your medical conditions are or can be genetically predisposed, including the celiac disease. Do any of your other family members have any of these conditions?

You are a strong young woman to have come through all this. May life be kinder to you in the future. Any help we can be to you with the gluten free diet, just let us know.

SarahAnn92 Newbie
SarahAnn92
Posted
  • Author

Thanks everyone!! :)

And no, strangly, I'm the only one in my family(at least that is known) with any of these diseases.

GFinDC Veteran
GFinDC
Posted

Thanks everyone!! :)

And no, strangely, I'm the only one in my family(at least that is known) with any of these diseases.

Hi,

Celiac can cause lots of damage when untreated by the gluten-free diet. So it would be a good idea to learn about eating gluten-free and other possible food intolerances. Lots of us have secondary food intolerances like soy, or corn or egg etc that can affect us almost as badly as gluten in some cases. Soy is one of the worst things for us IMHO.

Open Original Shared Link

* Milk

* Eggs

* Peanuts

* Tree nuts (such as almonds, cashews, walnuts)

* Fish (such as bass, cod, flounder)

* Shellfish (such as crab, lobster, shrimp)

* Soy

* Wheat

One of the best ways to start the gluten-free diet is not eat any processed foods for a few months at least. Eat all home cooked meals from whole ingredients instead. No boxes or cans of foods with preservatives and food colorings added etc. Rice or quinoa is a good base for adding veggies and meats to for a meal.

Another helpful thing to consider is an elimination diet, where you start with just a few foods, maybe 5, and slowly add new foods to your diet. The idea is to simplify your diet to the point you can detect problems caused when you add a new food. So you would typically add one new food every 3 days and record your reactions in a food journal. When you hit an issue food, you eliminate it from your list of good foods.

You might also have Open Original Shared Link. Crohn's is usually treated with immune system suppressant drugs. But some Crohn's people find the gluten-free diet does help them also.

Mayo Clininc again:

quote

While there's no known medical cure for Crohn's disease, therapies can greatly reduce the signs and symptoms of Crohn's disease and even bring about long-term remission. With these therapies, many people with Crohn's disease are able to function well.

unquote

My younger brother had both Crohn's and celiac. They gave him prednisone, but never tried the gluten-free diet. There are newer drugs for Crohn's now though that was 20 years ago.

Another thing you might want to consider is getting some gluten-free vitamins. They sell some on the main page for this site. One commonly recommended one is liquid B-12. Vit D, K, magnesium and calcium may also help. Some people say L-GLutamine can help repair intestinal cells also.

There is also an enzyme called DPP-IV that can help a little with gluten.

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

Celiac.com Sponsor (A8-M):


Archived

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

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


  • Member Statistics

    • Total Members
      131,551
    • Most Online (within 30 mins)
      7,748
    Newest Member

    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.