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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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    • knitty kitty
      @Hmart, The reason why your intestinal damage was so severe, yet your tTg IgA was so minimal can be due to cutting back on gluten (and food in general) due to worsening symptoms.  The tTg IgA antibodies are made in the intestines.  While three grams of gluten per day for several weeks are enough to cause gastrointestinal symptoms, ten grams of gluten per day for for several weeks are required to provoke sufficient antibody production so that the antibodies move out of the intestines and into the blood stream where they can be measured in blood tests.  Since you reduced your gluten consumption before testing, the antibody production went down and did not leave the intestines, hence lower than expected tTg IgA.   Still having abdominal pain and other symptoms this far out is indicative of nutritional deficiencies.  With such a severely damaged small intestine, you are not absorbing sufficient nutrients, especially Thiamine Vitamin B 1, so your body us burning stored fat and even breaking down muscle to fuel your body.   Yes, it is a very good idea to supplement with vitamins and minerals during healing.  The eight essential B vitamins are water soluble and easily lost with diarrhea.  The B vitamins all work together interconnectedly, and should be supplemented together.  Taking vitamin supplements provides your body with greater opportunity to absorb them.  Thiamine and the other B vitamins cannot be stored for long, so they must be replenished every day.  Thiamine tends to become depleted first which leads to Gastrointestinal Beriberi, a condition that doctors frequently fail to recognize.  Symptoms of Gastrointestinal Beriberi are abdominal pain and nausea, but neuropathy can also occur, as well as body and joint pain, headaches and more.  Heart rhythm disruptions including tachycardia are classic symptoms of thiamine deficiency.  Heart attack patients are routinely administered thiamine now.   Blood tests for vitamins are notoriously inaccurate.  You can have "normal" blood levels, while tissues and organs are depleted.  Such is the case with Gastrointestinal Beriberi, a thiamine deficiency in the digestive tract.  Eating a diet high in carbohydrates, like rice, starches, and sugar, can further deplete thiamine.  The more carbohydrates one eats, the more thiamine is required per calorie to turn carbs into energy.  Burning stored fats require less thiamine, so in times of thiamine shortage, the body burns fat and muscles instead.  Muscle wasting is a classic symptoms of thiamine deficiency.  A high carbohydrate diet may also promote SIBO and/or Candida infection which can also add to symptoms.  Thiamine is required to keep SIBO and Candida in check.   Thiamine works with Pyridoxine B 6, so if Thiamine is low and can't interact with Pyridoxine, the unused B 6 accumulates and shows up as high.   Look into the Autoimmune Protocol diet.  Dr. Sarah Ballantyne is a Celiac herself.  Her book "The Paleo Approach" has been most helpful to me.  Following the AIP diet made a huge improvement in my symptoms.  Between the AIP diet and correcting nutritional deficiencies, I felt much better after a long struggle with not feeling well.   Do talk to your doctor about Gastrointestinal Beriberi.  Share the article linked below. Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Keep us posted on your progress!
    • Trish G
      Thanks, that's a great addition that I hadn't thought of. 
    • trents
      Other diseases, medical conditions, medications and even (for some people) some non-gluten foods can cause villous atrophy. There is also something called refractory celiac disease but it is pretty uncommon.
    • trents
      knitty kitty asks a very relevant question. So many people make the mistake of experimenting with the gluten free diet or even a reduced gluten diet soon before getting formally tested.
    • trents
      Another great fiber option is dried apricots. Four of them give you 3g of fiber and I find they don't produce all the gas that some other high fiber options do. They taste good too. Costco sells a large bag of them that are labeled gluten-free so you don't have to worry about cross contamination issues like you might in bulk grocery settings.
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