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

Need Support During Diagnosis

sam3gemini

Recommended Posts

sam3gemini Newbie
sam3gemini
Posted

Hi,

I haven't been on since May...thought things were getting better, but turns out they've only been getting worse.

I need someone who might be willing to support me as I take my 3 year old son through the diagnosis process, as I am already getting the "bandwagon" look from my doctor, thinking "oh, everyone thinks they have celiac now", but the more I read, the more I'm absolutely convinced this is what my son is dealing with.

I will check back here, but I'm hoping there's someone willing to "take us on", through e-mail over what I know is going to be a long process.

my email is sjderoos@yahoo.ca, I really hope someone will feel the call to help us out....i'm sure you know as parents how frustrating this process can be. After a year of more poop than any one person should ever have to deal with :-), i'm getting tired and frustrated, not to mention heart broken from seeing my little boy hang his head in shame everytime he has an "accident" b/c he just has no control over his bowels anymore.

BTW, we are canadian, dealing with the Ontario health care system...(not complaining).

Sam

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

Celiac.com Sponsor (A8-M):


vampella Contributor
vampella
Posted

I am so sorry you have to go through this, I'm also in Canada (Manitoba).

I have had no problems here YET. Has blood work been done on your little one? It's so hard to watch them like this.

mamatide Enthusiast
mamatide
Posted
BTW, we are canadian, dealing with the Ontario health care system...(not complaining).

Sam

Hi. Also a mom of a previously very sick little girl, now 5, who would have had to wait 9 months for a consult and at minimum 11.5 months for a biopsy in the Cdn health care system...

Please be strong. And don't hesitate to go gluten-free and stick to your guns if you do choose to do so. But one word of caution - don't go gluten-free unless you're sure you're completely gluten-free with your 3yo. I can understand why people say it's not a good indicator. Going 100% gluten-free is really difficult. Gluten sneaks in where you least expect it (cutting boards, butter dish when someone else thought it really didn't matter and you were being hyper-sensitive, shampoo, hand lotion (you eat more hand lotion that you'd probably care to believe)......

When DH and I made the decision to do a gluten-free trial with our daughter, I insisted we be vigilant about it. We got rid of the old fry pans, the old cutting boards. We washed out the cupboards, threw out the gluten-containing stuff.

Not because we are some sort of radical gluten irradicators, but because if we were going to do a trial and put any trust whatsoever in it (without medical supervision - see our medical wait times above), we didn't want to make any mistakes.

And we still made mistakes - two mistakes that we were able to trace back to ingredient listings on things that we never ever suspecte would have gluten. Literally pulling wrappers out of the garbage can as DD was on the toilet in pain.

So I encourage you strongly to pursue this but don't start counting the results until you're really confident that you're being strict or else your experiement's results won't be worth the effort.

vampella Contributor
vampella
Posted
Hi. Also a mom of a previously very sick little girl, now 5, who would have had to wait 9 months for a consult and at minimum 11.5 months for a biopsy in the Cdn health care system...

How do you know you would've had to wait that long? We only have 1 Ped GI in our whole prov. and the wait is about 3 months. I have no idea how long for biopsy. The kind of wait you are talking about is completely unacceptable. I'm sorry that was your experience.

I also have to agree with mama "So I encourage you strongly to pursue this but don't start counting the results until you're really confident that you're being strict or else your experiement's results won't be worth the effort." There are so many places gluten hides. GOOD LUCK.

Sillyyakdidi Apprentice
Sillyyakdidi
Posted
Hi,

I haven't been on since May...thought things were getting better, but turns out they've only been getting worse.

I need someone who might be willing to support me as I take my 3 year old son through the diagnosis process, as I am already getting the "bandwagon" look from my doctor, thinking "oh, everyone thinks they have celiac now", but the more I read, the more I'm absolutely convinced this is what my son is dealing with.

I will check back here, but I'm hoping there's someone willing to "take us on", through e-mail over what I know is going to be a long process.

my email is sjderoos@yahoo.ca, I really hope someone will feel the call to help us out....i'm sure you know as parents how frustrating this process can be. After a year of more poop than any one person should ever have to deal with :-), i'm getting tired and frustrated, not to mention heart broken from seeing my little boy hang his head in shame everytime he has an "accident" b/c he just has no control over his bowels anymore.

BTW, we are canadian, dealing with the Ontario health care system...(not complaining).

Sam

i'm so sorry to hear your little boy is sick! Please hang in there, It must be so tough because he's just at the age where he knows something is wrong but doesn't know it's not his fault. Keep your head up! I hope things go quickly with the diagnoses, and in a way you are blessed that you can figure all of this out with him at such a young age...it took 20 years to get my diagnoses and it was very late by that point.

sam3gemini Newbie
sam3gemini
Posted
  • Author

Hi,

So did you not have the testing done then? You decided to go totally gluten free and run your own trial? I am considering this, i'm waiting to hear back about the referral to see how long the wait will be.

I am concerned about taking the whole family gluten free b/c it will be so expensive (there are 5 of us), but i don't want to botch the experiment either if we do it that way.

thanks for all of your support, everyone who replied. i'll keep you posted.

Sam

Hi. Also a mom of a previously very sick little girl, now 5, who would have had to wait 9 months for a consult and at minimum 11.5 months for a biopsy in the Cdn health care system...

Please be strong. And don't hesitate to go gluten-free and stick to your guns if you do choose to do so. But one word of caution - don't go gluten-free unless you're sure you're completely gluten-free with your 3yo. I can understand why people say it's not a good indicator. Going 100% gluten-free is really difficult. Gluten sneaks in where you least expect it (cutting boards, butter dish when someone else thought it really didn't matter and you were being hyper-sensitive, shampoo, hand lotion (you eat more hand lotion that you'd probably care to believe)......

When DH and I made the decision to do a gluten-free trial with our daughter, I insisted we be vigilant about it. We got rid of the old fry pans, the old cutting boards. We washed out the cupboards, threw out the gluten-containing stuff.

Not because we are some sort of radical gluten irradicators, but because if we were going to do a trial and put any trust whatsoever in it (without medical supervision - see our medical wait times above), we didn't want to make any mistakes.

And we still made mistakes - two mistakes that we were able to trace back to ingredient listings on things that we never ever suspecte would have gluten. Literally pulling wrappers out of the garbage can as DD was on the toilet in pain.

So I encourage you strongly to pursue this but don't start counting the results until you're really confident that you're being strict or else your experiement's results won't be worth the effort.

sam3gemini Newbie
sam3gemini
Posted
  • Author

[quote name Has blood work been done on your little one? It's so hard to watch them like this.

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

Celiac.com Sponsor (A8-M):


Momof3boys Newbie
Momof3boys
Posted

I would just say to stick with it. My son started having diarrhea 6 times a day when he was 2. We finally got referred to a bad GI doctor and she said he was too big of a kid to have celiac's disease so she didn't test him (I thought she had). Welll a year later he was 3 and still not potty trained and having a combo of diarrhea and contstipation. So we took him to a different doctor and they did the blood test and biopsy and low and behold he did have. And now I have been diagnosed as well. So I would stick with it and trust your instincts even if he doesn't fit the "classic" case. My son didn't, and he definitely has it. And at age 4 we are still having problems with potty training and I think it is because he is old now and missed the "bet" time to potty train!

naturalmomma Newbie
naturalmomma
Posted

I have been blessed cause I have an awsome doc. Kids brain development is crusial and waiting forever for diagnosis when clearly it is the prob is dumb. My doc also says that most of the time the test comes out negative regardless. My oldest jonah is autistic/ turettes /adhd and responded well to gluten/casein free. Middle has poopy problems and behaviour and is short stature ,he is responding well. my littlest boy, yes three boys, was 16 pound and 15 months and has started to grow. I also have celiac disease,interesting how it can affect kids in so many different ways!! i understand some people need that diagnoses and to rule out other problems and Im all for that,but we as moms are the best judge of things and know what is best. I didnt want to go spend lots of time waiting while my kids got sicker, I knew that was the prob. I am also from canada,ut if i really need that comfort of a diagnoses i will send it to enterolabs, less invasive and faster. My doc is all for that way of doing it,and pretty obvoisly that was the answer,however its not the answer for everyone sothe tests are obviously needed but there should be a better and faster way!!

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.