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The Miracle That Is The Gluten Free Diet!

inskababy

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inskababy Rookie
inskababy
Posted

I cannot believe what a difference this had made for my oldest son! My youngest son had a celiac crisis and was diagnosed last month. I started to suspect that my oldest son might have gluten issues as well...after doing lots of reading, I realized he had very mild GI symptoms that could be linked to intolerance. He is almost always sick...lots of diarrhea episodes that have gotten increasingly worse, to the point of not being able to hold it after a taste of pretzel. He's also a very late talker, and while very sweet tempered, has some pretty crazy tantrums from time to time...ones that last for hours.

I got him tested two weeks ago and took him off gluten immediately thereafter, and I swear a different child is living in my house. He's chattering away all day now, with 10-15 new words a day -- he's sleeping 12 solid hours at night when I was lucky before to get 4 before he was crying for me to come get him -- not a single time out for two weeks -- no diarrhea and his first truly solid poop in 2 years. First time it didn't float either! It took forever to potty train him because he hated getting diarrhea in his big boy pants. He chows his dinner every night and has lost most of his pickiness issues. He willingly went shoe shopping and got his haircut without flipping out for the first time ever. He's gained 1/2 lb in just two weeks. Oddly enough I had to take his pants in on elastic despite weight gain because apparently his tummy has lost some swelling.

His blood tests came back two days ago as negative for celiac disease, but he was anemic which the dr said was a red flag regardless of the test result. The doctor felt strongly that he would still benefit from a gluten free diet (umm, duh) and thinks he does have celiac disease, given that my husband and youngest have it and he's gotten so much better. When we went to go get tested, he was scared of her, wouldn't speak and cried during the blood draw. When we went back for results, he bounced in, jumped on her lap and just started chattering away all while letting her actually examine him. She was blown away.

This is AMAZING. I'm just in tears...both in gratitude for the fix and that I'm sad that I didn't realize sooner that he wasn't just "delicate" or "high needs" or "sensitive" -- he was sick. I would be cranky all the time if I never felt good too.

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MySuicidalTurtle Enthusiast
MySuicidalTurtle
Posted

Congratulations!

taweavmo3 Enthusiast
taweavmo3
Posted

I'm so happy for you! I too have one child that tested positive after being very, very sick for a long time. Not too long after that, I ended up putting all my kids on the diet even though their tests were negative. We saw such positive results, we haven't looked back since! Hope you continue to see improvement, it's great to see the progress happen so fast.

lizajane Rookie
lizajane
Posted

me, too!!!

i was diagnosed in March AND my father in law has it. so seeing some possible symptoms in my 4 year old was enough for me to try gluten free for him. We didn't even have him tested, just took him off gluten. he finally sleeps all night (i wish he slept past 6am, though!) and he is pleasant nearly all day every day. and the tummy is gone!

hooray for you and your family!!!

CeliacMom2008 Enthusiast
CeliacMom2008
Posted

Isn't it just amazing! We also saw dramatic improvements in so many areas of our son's life. And we too wished we'd known sooner. When I look back at all the Ibuprofen we gave him just so he could get some sleep at night (he'd complain of his ankles and legs hurting so much as a toddler), it breaks my heart to know that his little body needed Calcium to grow properly. Or how much of his little childhood he slept through, because "he's a sleeper, you know." And all the doctors that told us he wanted attention at night, his arches weren't formed yet, he might have juvenile arthritis so let's get him tested, his intestinal issues are because he eats so many fruits and veggies, etc...UGH!

He is soooo much healthier, happier, active, etc. I'm so glad your little guy is doing so well too!!

ang1e0251 Contributor
ang1e0251
Posted

I'm so glad you have found the solution for your little guy! A sick child is such a worry.

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    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
    • captaincrab55
      Finding gluten free ingredients

      By captaincrab55 · Posted

      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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