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

Hello.....i'm Scared!

KAG

Recommended Posts

KAG Rookie
KAG
Posted

Hello,

I found this site about a year ago and really haven't been back until a few months ago. I don't think I ever introduced myself and I am not very saavy with message boards. I did post a few times but never even thought of introducing myself. So, here I am. Hello. I have just recently started going back to the doctor again after 4 or 5 years of avoiding them (other than to get my thyroid meds and yearly exam, I just say, "everything's fine" and move on). I will start at the beginning and try to be brief before I get to my main questions.

I think I have had dairy allergies from early on because of ear infections, bed-wetting, and how sick I looked in a lot of childhood photos, also with eye shiners. My mother didn't have a clue. The real problems started with my first pregnancy. I was always constipated most of my life but I think that had to do with dairy. I started with several digestion issues like heartburn that weren't that big of a deal, but getting worse. When I was getting divorced a year later, I basically had every type of digestion problem except throwing up. I was in a lot of pain and alternated between D and C.

I started with the doctors who put my on anti-depressants, then every IBS medication. I had pre-cancerous polyps. Then went to candida, allergy doctor. I was treated for candida and they confirmed a dairy allergy. I pretty much jumped from doctor to doctor. I did get a endoscopy, but the doctor didn't even do a biopsy, he just said everything "looked" ok.

This was 12 years ago when it started. I found out about celiac on my own. I have been eating a natural whole foods diet and I am not in pain anymore. I found a natural doctor to put me on armour thyroid which helped a lot of my problems that I didn't even know could get better.

I have to go back to the doctor to get another colonoscopy. I went over my symptoms and stuff and I just had a stomach emptying test, don't know the results yet. It seems like when I have D, then I won't have another BM for 2 days. It just seems like it takes two days to get food through my system. I can also burp up food many many hours later. I also feel like I have a lot of bad bacteria and I take quite a bit of probiotics.

What I know for sure: eating gluten causes me to have uncontrollable smelly gas and sometimes the gas leaks out without me knowing it, dairy causes me to have constipation and I can have symptoms for three days and I loose my sense of smell, I think it is the inflammation. My hair falls out, I have acne, I have been B12 anemic.

I had been cheating with dairy way too much and I have just been a few weeks without any dairy. I just never seem to be symptom free so I don't know what else could be going on.

My new doctor is going to be doing bloodwork and I am going to have another colonoscopy and he is also going to be doing an endoscopy. But he wants me to be on gluten for 3 weeks, which starts today. There is a possibility that it may show up negative anyway.

But my questions, I just can never get a handle on my problems so I want to know if it is celiac and if I just need to be more careful or is it something else? I don't keep much gluten in the house, and my kids are careful. The problem is my mother that she just doesn't get it even though she has all kinds of problems like diabetes that could be improved with diet. Oh well, another story.

The biggest issue is that sometimes I can have really smelly gas that I can't even feel and sometimes my smelling goes so it gets very embarrasing sometimes. I want to get tested but I know the next three weeks are going to be hell. And it's hard to think about eating gluten (rat poison) right now.

I've been kind of gluten free for quite a while but I have found that my vitamin e had gluten and a few other things. I'm sorry I am rambling and trying to cover everything, but at this point it all feels hopeless and I am doomed to live a life as a hermit.

Kim

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

Celiac.com Sponsor (A8-M):


gfgypsyqueen Enthusiast
gfgypsyqueen
Posted

Hi,

I know you have to eat gluten for a biopsy, the debate is how long. Some people say 6 mths before you will see any damage that can be found in a biopsy.

Gastric emptying, if it comes back delayed i.e., gastroparesis, ask about the meds and the side effects of them. Some of the meds really make me crazy. I refused to take them. Others only work for so long. I like the herbs best. Try to de-stress your life, that will help.

Sounds like you eat some dairy and eat some gluten, by try to remain free of both. Regardless of the biopsy results, you might do well on a strict gluten free dairy/casein free diet for 6mth. No mistakes, no cheats, ultra strict.

Quite a few of us had terrble gas, D, C, weight loss, weight gain, moods, sleep problems, depression, the list just goes on and on. Sometimes the biopsy finds damage and sometimes there is no damage but the person feels better on this diet. Once you go completely gluten-free and casein free for a few months you will probably start feeling better.

BTW, immediate family, like moms and dads and siblings, don't always have the best reaction to the news that you have celiacs and they might too. IMO, worry about yourself. When you feel better and are back to your old self, they may want more info, but more than likely they will still not want to know that this "crazy disease" could have come from them.

KAG Rookie
KAG
Posted
  • Author
Hi,

I know you have to eat gluten for a biopsy, the debate is how long. Some people say 6 mths before you will see any damage that can be found in a biopsy.

Gastric emptying, if it comes back delayed i.e., gastroparesis, ask about the meds and the side effects of them. Some of the meds really make me crazy. I refused to take them. Others only work for so long. I like the herbs best. Try to de-stress your life, that will help.

Sounds like you eat some dairy and eat some gluten, by try to remain free of both. Regardless of the biopsy results, you might do well on a strict gluten free dairy/casein free diet for 6mth. No mistakes, no cheats, ultra strict.

Quite a few of us had terrble gas, D, C, weight loss, weight gain, moods, sleep problems, depression, the list just goes on and on. Sometimes the biopsy finds damage and sometimes there is no damage but the person feels better on this diet. Once you go completely gluten-free and casein free for a few months you will probably start feeling better.

BTW, immediate family, like moms and dads and siblings, don't always have the best reaction to the news that you have celiacs and they might too. IMO, worry about yourself. When you feel better and are back to your old self, they may want more info, but more than likely they will still not want to know that this "crazy disease" could have come from them.

KAG Rookie
KAG
Posted
  • Author

Thank you.

What type of herbs do you use? Besides my thyroid medication, it seems like all of the medications I have ever been on have caused more of a problem than any help. My daughter said that if I know that gluten was a problem then what does it matter what the test said. I have to go in to get a colonoscopy any way. Sometimes I just wish I had answers. And you are probably right. I have not been strict enough to see enough results.

Kim

Archived

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

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


  • Member Statistics

    • Total Members
      131,547
    • Most Online (within 30 mins)
      7,748
    gizmo1jazz2
    Newest Member
    gizmo1jazz2
    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.