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ChickenFeet

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ChickenFeet Newbie

Hi.

I am 26 years old with two kids. I have started on this gluten-free odyssey because of my oldest daughter Z. I thought it might benefit her, but did not anticipate it affecting me so positively. We have only been low-gluten (I keep messing up! Like I ate some soy sauce thinking it didn't have much gluten in it and used a seasoning mix that I think must have had gluten in it) for a little over a week now. I guess I will start with Z.

She started showing some autism spectrum stuff when she was 2 1/2. It was really scary for me because it was like she was a whole different child. I read about gluten intolerance on the internet and found that these symptoms were similar. I tried her on a gluten-free diet for a week but then she was diagnosed with a kidney reflux and had to go on a high-fiber, high-wheat diet in order to reduce constipation in the hopes that it would alleviate some of the pressures inside her bladder. There are more details about this in a reply to another person's topic post and I don't feel like writing it all again! Anyway to make a long story short, their diet did not help her at all and if anything made it all worse. Well, apparently she did not grow at all this past year if the measurements they took last year were accurate. Her blood test for celiac antibody was normal a week ago, but I am doing this anyway. She is a lot calmer, less anxious, does not complain that her stomach hurts anymore (before I thought it was because she needed to pee), does not tell me her "bones hurt" (she points to her joints), and does not complain of hunger as much. She is also pooping a few times a day. She has also been showing some signs of OCD (scary thoughts that she tells me about) and I have not heard from her about that in almost a week. She has not told me anything disturbing and seems happier. She does not know the symptoms of celiac or gluten intolerance so this is not placebo on her part. All she knows is that we are not eating things with gluten in them.

I have a two and a half month old daughter H, too. She is breastfed exclusively. She has been vomitting and spitting up excessively since birth. I have been trying to figure out what her problem is by watching my diet. I know cow's dairy, nuts, peanuts and its butter, and possibly eggs make it worse. She is on Zantac but it did not seem to make much difference. I knew there had to be something else that I was eating all the time, something sneaky that was involved too. When I started my daughter gluten-free, I went gluten-free too and H has stopped throwing up for the most part. She is still doing the normal spitting up after eating, but not the projectile, sudden, and unpredictable vomitting a few times a day like before.

I am now wondering if I am celiac and never realized it before. A few days after stopping gluten, I suddenly realized I wasn't thinking about my stomach. I was bloated and a little sore before without ever realizing it. I have been having more frequent bowel movements, have NO HEADACHES!, have a better memory, my OCD has gone down a bit, I have more energy, am actually sleepy at night and sleep better. About 10 months before getting pregnant with my daughter, I gave blood and was badly anemic for 8 months after and the iron pills were not helping. I craved liver so badly that I just cooked a slab of it in an iron skillet and inhaled it. I was to the point of nearly passing out because of it. For whatever reason, I could not recover from the blood loss. Also before I was pregnant I was going to to see a GI doc about some severe, sharp abdominal pain that I was having all the time that made me think something serious was going on. I never considered celiac at the time, but now I wonder. And it occured to me that maybe H is not sensitive or intolerant, but what if she is getting my celiac antibodies and is having a reaction for that reason? She has been virtually throw-up free for two to three days, but I ate a tiny bite of real bread today, and she has been throwing up ever since her feeding afterwards. It was such a tiny bit for it to get into the milk supply and cause a reaction of her own that I cannot help but wonder if I reacted to it and she just got the antibodies from me. That seems to be much more likely than a tiny bit affecting her directly through the gluten entering her body. My stomach is cramping a little now.

I have had OCD since age four and severe migraine since age 11. It was the migraines that caused me to be misdiagnosed with epilepsy by a silly doctor who has been dismissed from her employers. They are complicated in that they mimic stroke and can actually cause stroke. I have not have any migraines threaten since I went gluten-free and have not had the headache I have had all day every day the time for the last several years.

My younger sister has IBS and she is coming to visit in a few weeks and will be eating what we eat. I wonder how this will affect her.

I don't want to get tested now because then I will have to consume wheat in order to get the best possible chance of accurate results and my baby will be sick and throwing up again.

-Kelli


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jackay Enthusiast

It sounds to me like you have your answer even without testing. All three of you are doing better without gluten. That's wonderful! If you rid your house of gluten, you won't be tempted to eat anything that contains it.

GFinDC Veteran

It doesn't hurt anyone not to eat gluten. So there is no harm in trying it for a few months or more to see what happens. It can only help if there is an issue with it. So I think you are on the right track. The gluten free diet can be a very healthy diet also, if you follow a whole foods diet. A whole foods diet as in eating foods that aren't processed, flavored, colored, preserved, emulsified and stuffed into boxes with colorful labels etc. You would be eliminating all those chemicals from your diet, which is prolly a good thing. You shud wash / rinse your fresh produce though and rice before cooking it.

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    • Samanthaeileen1
      thank you RMJ! That is very helpful advice. Good to know we aren’t crazy if we don’t do the endoscopy. We are going to try the gluten free and see how symptoms and levels improve.    thank you Wheatwacked (love the username lol) that is also reassuring. Thankfully she has an amazing and experienced pediatrician. And yesss I forgot to mention the poop! She has the weirdest poop issues.    How long did it take y'all to start seeing improvement in symptoms? 
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      here are the lab ranges.  Normal ranges for tissue transglutaminase are: <15.0 Antibody not detected > or = 15.0 Antibody detected normal for endomysial antibody is < 1.5. So she is barely positive but still positive. 
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