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

Pre Dignosis Celiac Kids: Why All The Gluten?


NewGFMom

Recommended Posts

NewGFMom Contributor

First of all... I'm a little warm and fuzzy from the out pouring of detailed support I've gotten from this board in the last 24 hours. Thanks SO much.

I have a general question about celiac disease in general. Does anybody know why kids, and some adults, with celiac disease eat so much gluten before they're diagnosed. I know four people with celiac disease, and all of them ate a disproportionate amount of gluten-carbs prior to diagnosis. My son lived on pasta, cereal and crackers. My dear friend with celiac disease described herself eating 'spaghetti sandwiches' and my husband's cousin's child also ate and all pasta diet before his mom pulled the plug. (He's autistic, and the gluten free diet is also part of managing the autism-but I think he technically has celiac disease).

Why is this? It seems that our bodies natural aversions to substances that make us sick don't exist with this disease. Why are celiac kids totally adverse to most 'safe' foods (at least mine is).

Any anecdotal evidence, or theories about this out there?

Thanks in advance,

Margaret


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



Celiac.com Sponsor (A8-M):



TrillumHunter Enthusiast

I think we all have tummy aches and carbs are "bland" food. Think of what they tell you to eat when your tummy aches. Or, any time you have problems going your told to eat MORE fiber aka wheat.

OTOH-I think my mother has celiac as well and she has always had an aversion to bread products.

Nathan's mom Apprentice

No theories - just have read that with allergies or intolerances it is not unusual to find the person really craving or disliking the particular food. We used to call my son a "carbivore". Since he is now gluten-free (he is still getting carbs through gluten-free pasta, bread, etc.) he is really opening up to other foods - salads, guacamole, stir-fry, and such. I still can't get over him putting something green in his mouth!

Guest j_mommy

I was the same way. I LIVED on bread,pasta ect!!!! You know. now that it's gone,I really don't crave it as much as I thought I would. i occasionally sub with a rice pasta but not often. I've been gluten-free for alittle over a month and just made bread yesterday!!!

Ursa Major Collaborator

I believe it is because for people who are intolerant to gluten, it acts like an opiate on the brain. We were addicted to gluten the same way people get addicted to street drugs, it made us feel good emotionally at the same time it made us feel physically sick. It could give us a high even though it could cause depression and other emotional problems as well. No wonder people with this addiction don't want to eat anything else at times!

That is also why many people get serious withdrawal symptoms when first going gluten-free.

I also lived on Bread, in my case German rye bread. I couldn't live without it. I still crave it. It doesn't bother me to see the fluffy Canadian bread around, I've always hated wheat bread. But it is extremely hard for me to resist the temptation when I see German rye bread.

JennyC Enthusiast

I too think that it is an addiction thing. As I mentioned in another one of my responses my son also lived on carbs before diagnosis. Now he is opening up a bit on what he will eat. Now he loves white meat and hot dogs. He also will try more fruits and veggies. He will now eat rice, but still no potatoes except french fries. We do eat a lot of gluten free pasta though. Mainly because it is the quickest dinner that I know right now.

gfgypsyqueen Enthusiast

I have no idea where I heard this tidbit, but I heard that your body, in a sense, craves what it cannot process. Like more of the stuff will make your body figure it out. I ate excessive amounts of nuts while nursing my first child (and I was also sick with undiagnosed celiacs) and she now has a severe nut allergy. You would think I would have learned, but with my second I ate excessive amounts of dairy while pregnant. (I thought healthy protein and calcium) She was born not able to tolerate dairy. Recently we found the trace amounts of dairy in her diet (in the bread and cookies) was making her sick and stopping her from growing.

I think some of us are predisposed to these allergens and intolerances and just crave those items.


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



Celiac.com Sponsor (A8-M):



NewGFMom Contributor

That's what I suspected. I remember a year a go we were visiting my husband's cousin. I was complaining about my son's limited diet. I described it to his cousin, mother of three. She said that it sounded a lot like their middle son was eating before they stopped the gluten. I didn't think much of it because his gluten-free diet is in part, to manage his autism. But I'm pretty sure he has celiac disease (in retrospect).

But I crave large slabs of chocolate cake. :lol: But I'm not a carb person per se.

Kujda Rookie

Hello! I am new to this but very excited to have found people gong through the same thing as me. My son has not been diagnosed with celiacs but we are going through the testing. I have been trying for over a year to find out what was wrong. He also craved bread like I have never seen before. Bread and biscuits would cause a temper tantrum if he couldn't eat as many as he wanted. I asked the doctor about this in the beginning and I was told it was just something about my child. It had nothing to do with this allergy or anything else. I was shocked to read what was posted. Sometimes I think I am crazy and I feel dismissed by doctors. I guess after you are told for so long there is nothing wrong you start to wonder.

Does anyone have any experience with skin rashes and other skin problems related to celiac? My son has a lot of skin problems but I have been told they are mosquito bites or that he has caused the rash by scratching with his finger nails. Neither of which I believe and had a lively "disagreement" with the doctor this morning.

Thanks for being here-

kristin

tarnalberry Community Regular

Look at what the average person eats anyway - for many people, it's gluten, gluten, gluten already. And gluten-filled foods are so easy to get, so easy to snack on, and so easy to get in small sizes. I think it's *partly* cultural.

cgilsing Enthusiast

I was very much the opposite. I have always hated "bready" foods. I rarely ate breakfast because I just couldn't choke down the usual offerings of bran muffing, waffles, pancakes, and cereal. I never had a thing for pasta and although I was excited to find out they make gluten-free beer....I remembered after one bottle why I don't really care :lol: I have always thought that my body must have just known that it was bad for me.....but I can see how a person could have an opposite effect too. Maybe if he was malabsorbing he was craving something (carbs?) from the breads and pasta.

katerimom Newbie

My daughter never experienced this. When she was less than a year old, before diagnosis, she would pick the meat out of her spaghetti, never EVER eat goldfish crackers, cheerios, etc., loved steak and potatoes, she would pick a banana over a cookie, she even ate ONLY the frosting off of her first birthday cake!!! What she really wanted on her first birthay was the ice cream, then a nap! The little bit of cake that I FORCED her to eat made her fatigued. She still at age 3 1/2 hates the texture of gluten-free bread.

raymonds mom Newbie

:unsure::unsure:

Hi everyone!,

I have been struggling for the past year with this and now the last 4 months they have put my son off and on a gluten free diet. I have been trying to fill 1 day at a time with gluten free products but seem to run out of ideas.. He is the youngest of 4, how do we afford this stuff?

Lisa

Nic Collaborator
Or, any time you have problems going your told to eat MORE fiber aka wheat.

This just reminded me, before my son was diagnosed at 4 he was terribly constipated everyday. The doctor of course kept saying "more fiber". So I in turn go out and buy frosted mini wheats and every morning he would eat a big bowl of frosted mini wheats in milk. Of course we find out later he is not only Celiac but dairy intolerant too. Isn't that terrible, I was giving him a big bowl of everything he can't tolerate.

Nicole

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - suek54 replied to suek54's topic in Dermatitis Herpetiformis
      8

      Awaiting dermatitis herpetiformis confirmation following biopsy

    2. - trents replied to dani nero's topic in Dermatitis Herpetiformis
      191

      DH Photo Bank

    3. - KeriRae replied to dani nero's topic in Dermatitis Herpetiformis
      191

      DH Photo Bank

    4. - Aretaeus Cappadocia commented on Scott Adams's blog entry in Gluten Busters: Gluten-Free Product Alerts by Celiac.com
      7

      Simple Mills and Made Good Foods Products May Contain Gluten Levels Above the FDA's Allowable Limit of 20 ppm

    5. - Russ H replied to Ginger38's topic in Related Issues & Disorders
      27

      Shingles - Could It Be Related to Gluten/ Celiac

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,717
    • Most Online (within 30 mins)
      7,748

    Lellymay
    Newest Member
    Lellymay
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • suek54
      Hi all Biopsy confirmed dermatitis herpetiformis. Strict gluten free diet going OK, I cook nearly everything from scratch anyway and am finding gluten free  adaptations for most recipes.  I seem to be tolerating 50mg Dapsone well, regular blood tests OK so far.  Next derma appt in 8 weeks. I have some continuing itching and rash outbreaks, though nowhere near as severe as they were, so I am hoping for an increased dose, as the effect only seems to last 6-7 hours.  I think I may be burning through it more quickly than some due to other medication. Also I cannot mount a response to inflammation due to Addison's Disease.  I hope others are finding their way though the minefield that is dermatitis herpetiformis. Hang on in there! Sue (in UK)
    • trents
      @KeriRae, have you been diagnosed with celiac disease or with dermatitis herpetiformis?
    • KeriRae
      I've had this same rash on my back on and off for the last year or two.  I was taking LDN to help with other issues but quit awhile back. I'm wondering if LDN would help with this rash. 
    • Russ H
      Shingles vaccination also provides some protection against dementia: https://www.nihr.ac.uk/news/major-study-finds-new-shingles-vaccine-could-lower-risk-dementia
    • knitty kitty
      @Heatherisle, You have good reason to worry.   Ask the doctors to do an Erythrocyte Transketolace Activity Assay to test for Thiamine B1 deficiency.  Thiamine deficiency is frequently found in B12 deficiency.  Deficiencies in all the B vitamins are common with malabsorption due to Celiac disease.  Thiamine can run out in as little as three days.   Thiamine deficiency symptoms can be mistaken for other diseases such as MS and Guillian-Barre Syndrome.  Thiamine deficiency symptoms include pain in legs and abdominal pain as well as depression and gastrointestinal symptoms. Thiamine B1, Pyridoxine B6 and Cobalamine B 12 together relieve nerve pain. References and Interesting Reading: Wernicke’s encephalopathy mimicking multiple sclerosis in a young female patient post-bariatric gastric sleeve surgery https://pmc.ncbi.nlm.nih.gov/articles/PMC8462913/ Thiamine Deficiency Masquerading As Guillain-Barré Syndrome https://pmc.ncbi.nlm.nih.gov/articles/PMC11872742/ Dry Beriberi Due to Thiamine Deficiency Associated with Peripheral Neuropathy and Wernicke’s Encephalopathy Mimicking Guillain-Barré syndrome: A Case Report and Review of the Literature https://pmc.ncbi.nlm.nih.gov/articles/PMC6429982/ Is there a Link between Vitamin B and Multiple Sclerosis? https://pubmed.ncbi.nlm.nih.gov/28875857/ Thiamine Deficiency and Neurological Symptoms in Patients with Hematological Cancer Receiving Chemotherapy: A Retrospective Analysis https://pmc.ncbi.nlm.nih.gov/articles/PMC8559079/ The Effects of Vitamin B in Depression https://pubmed.ncbi.nlm.nih.gov/27655070/ Thiamine Deficiency Neuropathy in a Patient with Malnutrition due to Melancholic Depression https://pmc.ncbi.nlm.nih.gov/articles/PMC10942818/ Myopathy in thiamine deficiency: analysis of a case https://pubmed.ncbi.nlm.nih.gov/16920153/ Neurologic complications of thiamine (B1) deficiency following bariatric surgery in adolescents https://pubmed.ncbi.nlm.nih.gov/38705013/ B Vitamins in the nervous system: Current knowledge of the biochemical modes of action and synergies of thiamine, pyridoxine, and cobalamin https://pubmed.ncbi.nlm.nih.gov/31490017/ Neurological, Psychiatric, and Biochemical Aspects of Thiamine Deficiency in Children and Adults https://pmc.ncbi.nlm.nih.gov/articles/PMC6459027/ B Vitamin Deficiencies and Associated Neuropathies https://pmc.ncbi.nlm.nih.gov/articles/PMC12855320/ Concomitant Vitamin B1 and Vitamin B12 Deficiency Mimicking Thrombotic Thrombocytopenic Purpura https://pmc.ncbi.nlm.nih.gov/articles/PMC9887457/ Update on Safety Profiles of Vitamins B1, B6, and B12: A Narrative Review https://pmc.ncbi.nlm.nih.gov/articles/PMC7764703/  
×
×
  • 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.