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

Celiac Disease Vs. Metabolic Disorder

Guest mesasmom

By Guest mesasmom
in Parents, Friends and Loved Ones of Celiacs

Recommended Posts

Guest mesasmom
Guest mesasmom
Posted

I am going to try and keep this as short and as to the point as possible. Last February I, with the advice of a friend who has Celiac, pursued the possibility of my son having Celiac. I took him to a ped. GI and had the testing done. Celiac showed up in neither the blood testing or the EGD, biopsies. I continued him on a gluten-free diet going on the assumption that he had it and was too young for it to show up (he was 16 mos at the time of testing). The ped GI ordered testing through Prometheus Labs and I had to wait for prior authorization from the ins. co. I didnt push the issue and said I would do this last test if the dr. called me back (which now, 9 mos later, they haven't). My son was a million times better on a gluten-free diet so I didnt need something in writing to tell me he shouldn't eat gluten. I was content just "assuming" thats what it was. Then in Aug he had an absence or petit mal seizure. Three of my son's doctors feel that because he had such a positive reaction to the dietary changes (asthma, reflux, diarrhea all virtually went away within a week of going gluten free) and then had a seizure that it could be a metabolic disorder. I had no idea what that was. Basically they were saying that he might have a chemical "malfunction" that is not allowing his body to break down the gluten in foods and then triggered a seizure. He is currently under going testing for his seizures. I guess what my question is, is this....Has anyone else had anything like this, or heard of it? I was so excited that we had finally figured out what was wrong with him and now they are totally throwing a wrench into the works. Its like after all my research and pushing I finally was satisfied that he had celiac and now they are telling me it may not be that after all and may be something completely different????? To confuse things even further, after I figured out that my son needed a gluten free diet, I put my then 3 yr old on a gluten free diet as well and she immediately started gaining weight, had more energy and stopped having tummy aches. So if its not celiac in my son, whats wrong with my daughter???? I am so confused...AGAIN. Any advice or info would be greatly appreciated.

Thank you so much!

Amanda

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

Celiac.com Sponsor (A8-M):


happygirl Collaborator
happygirl
Posted

Amanda,

I'm sure others will add more insightful things :), but I just had to quickly post a few thoughts:

Your children might be non-Celiac gluten intolerant, so they would never test positive for Celiac. The bloodtests and endoscopies do not test for non Celiac gluten intolerance. So if you kids do better off gluten, then keep them gluten free! Go with your gut! Or, it could be Celiac, and because he is young, it just isn't showing up yet. Unless you put him back on gluten, you won't know....but honestly, there isn't much difference in 'treating' gluten intolerance and Celiac (this coming from top doctors at NIH and Johns Hopkins, amazingly!)....the treatment, as you know!, is a gluten-free diet. Many doctors are not aware that you can react to gluten, just not in a Celiac damaged way (celiac technically means villous atrophy, not "I get diarrhea when I eat gluten" :))

I don't know anything about metabolic disorders (hence, I'm not much help here), but if that is the theory, would he have to be eating gluten for a seizure to occur? If he was gluten free, then ....?

I just wanted to offer some support and I sincerely hope that you find some helpful answers. Hopefully someone on here witll have more knowledge. Good luck to you and your family.

Nancym Enthusiast
Nancym
Posted

Well, it certainly could be more than one thing going on. But if the gluten free diet is making everyone healthier, seems like a no-brainer to me.

marciab Enthusiast
marciab
Posted

Amanda,

It is always best to check with your son's doctor concerning any questions, but I thought my story might help you.

Are you aware that people can have seizures from gluten ? I believe this website explains it very well.

Open Original Shared Link

I am one of those who has nuerological symptoms like ataxia and seizures (myoclonus) from gluten. I had petit mal seizures too and knock on wood, have not had one of those lately either.

From what I understand and have experienced for myself, the smallest amount of gluten can cause me to have seizures now. But, I don't always respond to gluten with seizures. I did in the beginning but not anymore. I licked an envelope last week and did not have seizures.

Is it possible that your son digested some gluten ?

I've only been at this for 15 months, but I didn't want to leave you hanging. Others here have more experience than me and can probably explain this better...

marcia

Guest cassidy
Guest cassidy
Posted

I can't comment on the seizure side of things but I hope you will keep your kids gluten-free since they did so much better that way. Doctors sometimes suggest things that don't make sense and I would hate for them to tell you that you should try him on gluten again just to see.

Many of us would like definite answers and diagnoses that we really have celiac, but the tests just aren't that accurate. My blood work was negative but I feel like a new person on the diet. Luckily, I haven't had any other problems but I didn't listen to the crazy doctor who told me to do a gluten challenge for a few months and then do another blood test. Who wants to make themselves sick for a few months?

Hope you get some answers and he starts feeling better. Do you think anyone in your family has celiac? I'm pretty sure that my grandfather (now deceased) had it and my mother's sister - that made me feel a bit more like I was on the right path.

Ursa Major Collaborator
Ursa Major
Posted

Amanda, gluten intolerance can definitely cause seizures. It is very possible that your son had the seizure as a result of accidental gluten ingestion. Your doctor's theory doesn't make any sense at all to me. Keep your kids on a gluten-free diet, and be very diligent with it, so your son won't have any more seizures. To really keep him safe, it would be advisable to make your house totally gluten-free. Meaning that you and your husband should be gluten-free as well, at least in your house.

That way you'll likely find out which one of you the kids inherited it from, too.

janicelm Newbie
janicelm
Posted
I am going to try and keep this as short and as to the point as possible. Last February I, with the advice of a friend who has Celiac, pursued the possibility of my son having Celiac. I took him to a ped. GI and had the testing done. Celiac showed up in neither the blood testing or the EGD, biopsies. I continued him on a gluten-free diet going on the assumption that he had it and was too young for it to show up (he was 16 mos at the time of testing). The ped GI ordered testing through Prometheus Labs and I had to wait for prior authorization from the ins. co. I didnt push the issue and said I would do this last test if the dr. called me back (which now, 9 mos later, they haven't). My son was a million times better on a gluten-free diet so I didnt need something in writing to tell me he shouldn't eat gluten. I was content just "assuming" thats what it was. Then in Aug he had an absence or petit mal seizure. Three of my son's doctors feel that because he had such a positive reaction to the dietary changes (asthma, reflux, diarrhea all virtually went away within a week of going gluten free) and then had a seizure that it could be a metabolic disorder. I had no idea what that was. Basically they were saying that he might have a chemical "malfunction" that is not allowing his body to break down the gluten in foods and then triggered a seizure. He is currently under going testing for his seizures. I guess what my question is, is this....Has anyone else had anything like this, or heard of it? I was so excited that we had finally figured out what was wrong with him and now they are totally throwing a wrench into the works. Its like after all my research and pushing I finally was satisfied that he had celiac and now they are telling me it may not be that after all and may be something completely different????? To confuse things even further, after I figured out that my son needed a gluten free diet, I put my then 3 yr old on a gluten free diet as well and she immediately started gaining weight, had more energy and stopped having tummy aches. So if its not celiac in my son, whats wrong with my daughter???? I am so confused...AGAIN. Any advice or info would be greatly appreciated.

Thank you so much!

Amanda

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

Celiac.com Sponsor (A8-M):


Guest mesasmom
Guest mesasmom
Posted

I am of course, no matter what new test results and tests the doctors come up with, going to keep my two youngest gluten free. I was just curious if there was any connection with the two....celiac and seizures. So...thank you guys for clearing that up. I am glad to know that there is a connection and that I'm not crazy. As far as other family members, my two youngest children have it. I am adopted so I do not know my family history so as soon as I figured out what was going on with my son I had myself tested up the wazoo and everything came back normal. I, other than a slight lactose intolerance when i was younger, do not have any real symptoms. My husband however, refuses to be tested. I suspect it came from him. He has been diagnosed with IBS for years now, has contant stomach "issues" and he for a short time period was having absence seizures. I really feel he has celiac, or some form of gluten intolerance or sensitivity but refuses to be tested because he does not want to have to eat "that food". I've told him if it was between slowly killing himself or eating "that food" what would be choose and being as stubborn as he is, he said he'd rather be sick. So, I guess I just want to say thank you for the reassurance that I am doing the right thing and am not crazy. This site is truly a wonderful thing with so many amazing people! Thanks to everyone!

Amanda

  • 3 weeks later...
Betscc Newbie
Betscc
Posted

:rolleyes:

I am of course, no matter what new test results and tests the doctors come up with, going to keep my two youngest gluten free. I was just curious if there was any connection with the two....celiac and seizures. So...thank you guys for clearing that up. I am glad to know that there is a connection and that I'm not crazy. As far as other family members, my two youngest children have it. I am adopted so I do not know my family history so as soon as I figured out what was going on with my son I had myself tested up the wazoo and everything came back normal. I, other than a slight lactose intolerance when i was younger, do not have any real symptoms. My husband however, refuses to be tested. I suspect it came from him. He has been diagnosed with IBS for years now, has contant stomach "issues" and he for a short time period was having absence seizures. I really feel he has celiac, or some form of gluten intolerance or sensitivity but refuses to be tested because he does not want to have to eat "that food". I've told him if it was between slowly killing himself or eating "that food" what would be choose and being as stubborn as he is, he said he'd rather be sick. So, I guess I just want to say thank you for the reassurance that I am doing the right thing and am not crazy. This site is truly a wonderful thing with so many amazing people! Thanks to everyone!

Amanda

Amanda:

I have two children with metabolic disorders and my oldest just got bloodwork back today that confirmed Celiac Disease also. I did a search for metabolic disorders/celiac and your posts came up immediately. I am glad to find such a knowledgeable community and am sure I will be reading the boards closely to get help with my son's diet and many other things.

You should definitely find out exactly what disorder your doctors are talking about and then do a search for sites that are specific to that disorder. Metabolic disorders are very serious and many involve a visit to the nutritionist and an emergency protocol letter. My guys do not metabolize fats like most people do. When they are ill they need extra glucose usually administered by IV. Any metabolic disorder should be taken very seriously but can be managed once you know what your child needs. Once you find out exactly what metabolic disorder they are suspecting, you can research it more thoroughly. Good luck--they are usually rare but serious, although manageable when you know what is needed.

I guess my son is proof that you can have both.

Elizabeth

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.