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1 Month Gluten Free


happylittlemama

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happylittlemama Rookie

A month ago I was diagnosed with Celiac disease and having 3 kids on the autism spectrum and 6 kids all together. I decided we ALL would go gluten free. I wanted to relay what changes we have experienced so far.

My 11 y.o. son has Aspergers and ADHD. They wanted to tack on Schizophrenia but I begged for more time before that became a label. Things are not perfect for him yet, in fact it was just this last week (week 4) that he came to me three days in a row and told me he was feeling pretty good. I don't think I have ever heard him tell me he felt good. The schizophrenia is not a concern now. He is still on medications, which I hope a few years from now we will be able to take him off of possibly, but what a difference the meds. and his good mood are making. We are still having issues with bedwetting and some physical behaviors, but he is getting better on his own at controlling them. He's also grown 1/4 inch in a month!

My 9 y.o. son has teeth problems that after reading on this forum sounds like a common trait. I am hoping we can stop permanent damage to his teeth by changing his diet now. He has gained 7 lbs in this last month as well. He used to be in the bathroom for at least 45 minutes after every meal, but that is not occurring as much lately. He complains about being hungry a lot, and I don't think we are starving, but I wonder if food had become a comfort to him in the past. He is the only one who ever really had favorite meals...ironically, his favorite was a gluten free meal. :)He used to complain about headaches and joint aches but I haven't had to treat any with the exception of one day we accidentally glutened ourselves.

My 7 y.o. daughter is on the spectrum, they think she has Oppositional Defiant Disorder. The week I was diagnosed I was getting ready to ask about drug therapy because she was so out of control. Rages, violent outbursts, refusal to get dressed to doing schoolwork to petting the dog. She complained about her eyes hurting (even though her eyesight is like x-ray vision), headaches, back aches, her feet hurt and she had skin rashes. In one month she is a totally different kid (not perfect, but significantly better). No complaints of aches and pains, she's compliant most of the time and no rages! I didn't realize how sensitive she was until at church she ate some of the Sacrament bread. She was broken out in hives, had a headache, came home and fell asleep for 3 hours and had a headache that needed tylenol twice for. I never would have thought that one bite of bread could do that to her, or any of us, for that matter. I did feel bad at first as she was the one who went on and on about hating this diet and why couldn't she have cookies with her friends, but over the course of the month and talking with her and helping her to see that she feels better when she doesn't consume those things has helped. And she'll tell me she knows how sick she gets eating those things. For the record, I'm not asking for drug therapy for her.

My 6 y.o. son is autistic and I've not seen a major improvement with him on the diet, however at this time his speech is improving. He is estimated to be about 2 years behind in his development and speech accordingly. Today I was trying out some homemade gluten-free bread and he came to me and told me it wasn't growing like it should. I am happy to be able to start seeing how he interprets his world now; I'm glad to know he was taking so much in and now he can tell me about it. We still have some of the autistic behaviors though. Overstimulation is one and Friday's trip to the zoo proved that. We still have some meltdowns and odd behaviors associated with autism. He has the skin thing too and that has almost completely healed at this time. He was woken in the middle of the night complaining of his legs hurting on a nightly basis and there has not been one incidence of that in a month. The morning we had oatmeal that was not gluten-free was a nightmare, telling me that he is and will respond to the diet more and more as he heals.

My 4 y.o. son has chipped teeth, another kid in our family with teeth problems. My husband also has it too. For this child he has always been leaky: barfing, pooping, gassy, and he is still not completely potty trained at this point, but in the last month he has been doing really good because maybe he feels he has control over his bowels long enough to get to the toilet. He would not sleep at night either, and he's been doing pretty good with bedtime as well. He has a bit of speech delay and talks with a lisp, but he's suddenly been using big words, words I didn't know he knew and talking in complete sentences. He's also become more of a big brother to the baby and has tried to help him out and teach him things, rather than before where he seemed almost his twin. His belly used to be very distended, much like you would see on the little African babies, and it has gone down significantly. He's gone through a growth spurt this month. I suspected ADHD in him because of his tendencies to be much like my oldest, but those have almost disappeared as well.

My 2 y.o. was on the watch list for Autism. At 18 mo. he wasn't speaking and had some motor control delays. He is running, jumping, walking and has better control of his body now. He is speaking in sentences and most of his words I can understand. He even asks me questions and is getting ideas in his head about potty training! He also had bowel troubles, mostly severe constipation alternating with diarrhea, and that has changed to being fairly predictable and no diarrhea.

I'm sorry this is long, but I thought I would post on here for other parents to see how it can be different or the same for every kid. I have to admit I was a little overly optimistic when we started this diet because I thought all my autistic kids would magically get better over night. While there are changes, I had to back myself up and realize it is going to take time for them to heal that have the symptoms the worst. So we aren't 100% right now, but we are seeing major improvements. Thanks for ready this far!

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Thanks for sharing your progress and I hope you will keep updating. It may take years for some things to completely resolve as they have to heal from years of eating gluten. I'm just curious--are you doing Casein Free as well for your Autistic kids?

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happylittlemama Rookie

Thanks for sharing your progress and I hope you will keep updating. It may take years for some things to completely resolve as they have to heal from years of eating gluten. I'm just curious--are you doing Casein Free as well for your Autistic kids?

I am not doing casein yet, but we try to limit dairy products for the kids. My 7 year old won't drink milk unless she is forced, but we have tried the almond milk and I like it, just have to watch for deals on it. Once I get the gluten free thing down, I will try the casein. It's already been a huge lifestyle change just with the gluten..and then we moved, and then we homeschool. LOL.

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Smarts Rookie

I am not doing casein yet, but we try to limit dairy products for the kids. My 7 year old won't drink milk unless she is forced, but we have tried the almond milk and I like it, just have to watch for deals on it. Once I get the gluten free thing down, I will try the casein. It's already been a huge lifestyle change just with the gluten..and then we moved, and then we homeschool. LOL.

Thanks for posting this as I am finding it motivating. I just posted in the pre-diagnosis forum as I possible have celiacs. what I didn't mention there is that my 43 year old brother almost certainly has Aspergers and has suffered from eczema most of his life. I have tentatively started my 9 and 7 year old girls on a gluten free diet in the past fortnight (though they have eaten gluten products at times). My older girl has stomach issues, but my 7 year old has the worst temper. She has not been diagnosed with any disorder. At school she is very compliant, but she acts like "there is no one at home". At home she is a lively bubbly little thing - but will throw the most massive tantrums at the slightest suggestion of getting dressed, tidying up or any opposition. Learning that I have signs of celiacs disease now makes me hopeful that eliminating gluten from her diet will resolve this anger and also "unlock" her at school. Interestingly, I come from a family of little people. My 9 year old is also petite. Now I wonder if we are just genetically programmed to be little, or if gluten intolerance could be responsible.

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    • Anmol
      Thanks this is helpful. Couple of follow -ups- that critical point till it stays silent is age dependent or dependent on continuing to eat gluten. In other words if she is on gluten-free diet can she stay on silent celiac disease forever?    what are the most cost effective yet efficient test to track the inflammation/antibodies and see if gluten-free is working . 
    • trents
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    • knitty kitty
      Forgot one... https://www.hormonesmatter.com/eosinophilic-esophagitis-sugar-thiamine-sensitive/
    • trents
      Welcome to the forum community, @ekelsay! Yes, your tTG-IGA score is strongly positive for celiac disease. There are other antibody tests that can be run when diagnosing celiac disease but the tTG-IGA is the most popular with physicians because it combines good sensitivity with good specificity, and it is a relatively inexpensive test to perform. The onset of celiac disease can happen at any stage of life and the size of the score is not necessarily an indicator of the progress of the disease. It is likely that you you experienced onset well before you became aware of symptoms. It often takes 10 years or more to get a diagnosis of celiac disease after the first appearance of symptoms. In my case, the first indicator was mildly elevated liver enzymes that resulted in a rejection of my blood donation by the Red Cross at age 37. There was no GI discomfort at that point, at least none that I noticed. Over time, other lab values began to get out of norm, including decreased iron levels. My PCP was at a complete loss to explain any of this. I finally scheduled an appointment with a GI doc because the liver enzymes concerned me and he tested me right away for celiac disease. I was positive and within three months of gluten free eating my liver enzymes were back to normal. That took 13 years since the rejection of my blood donation by the Red Cross. And my story is typical. Toward the end of that period I had developed some occasional diarrhea and oily stool but no major GI distress. Many celiacs do not have classic GI symptoms and are "silent" celiacs. There are around 200 symptoms that have been associated with celiac disease and many or most of them do not involve conscious GI distress. Via an autoimmune process, gluten ingestion triggers inflammation in the villous lining of the small bowel which damages it over time and inhibits the ability of this organ to absorb the vitamins and minerals in the food we ingest. So, that explains why those with celiac disease often suffer iron deficiency anemia, osteoporosis and a host of other vitamin and mineral deficiency related medical issues. The villous lining of the small bowel is where essentially all of our nutrition is absorbed. So, yes, anemia is one of the classic symptoms of celiac disease. One very important thing you need to be aware of is that your PCP may refer you to a GI doc for an endoscopy/biopsy of the small bowel lining to confirm the results of the blood antibody testing. So, you must not begin gluten free eating until that is done or at least you know they are going to diagnose you with celiac disease without it. If you start gluten free eating now there will be healing in the villous lining that will begin to take place which may compromise the results of the biopsy.
    • Anmol
      Hello all- my wife was recently diagnosed with Celiac below are her blood results. We are still absorbing this.  I wanted to seek clarity on few things:  1. Her symptoms aren't extreme. She was asked to go on gluten free diet a couple years ago but she did not completely cut off gluten. Partly because she wasn't seeing extreme symptoms. Only bloating and mild diarrhea after a meal full of gluten.  Does this mean that she is asymptomatic but enormous harm is done with every gram of gluten.? in other words is amount gluten directly correlated with harm on the intestines? or few mg of gluten can be really harmful to the villi  2. Why is she asymptomatic?  3. Is Gliadin X safe to take and effective for Cross -contamination or while going out to eat?  4. Since she is asymptomatic, can we sometimes indulge in a gluten diet? ----------------------------------------------------------------------------------------------- Deamidated Gliadin, IgG - 64 (0-19) units tTG IgA -  >100 (0-3) U/ml tTG IgG - 4   (0-5) Why is this in normal range? Endomysial Antibody - Positive  Immunoglobulin A - 352 (87-352) ------------------------------------------------------------------------------------------------ Thanks for help in advance, really appreciate! 
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