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AMADISON - hi! Welcome. I appreciate reading your posts. The part about facial affect in particular. My kid has very flacid muscles in her face. Her voice is very monotone also. I've heard little about voice except a website I came across once.
I just met someone with UC and tried to tell her to go gluten-free -- she has a daughter who is bi-polar and a celiac daughter (who cheats monthly with her period because it hurts anyway! I had to tell her it might go away if she were consistently gf!!!!), and they have a celiac doctor in the family and they didn't know.
I was going to tell you that SOME doctors are dumb ... about "celiac" ... but what do I do with THAT doctor?!
Anyway, I'm glad you posted about your husband doing better with his UC going gf.
That's all. I'm too tired to think, but wanted to put that out there! G'night!
Edited by: DOTSLADY at: 1/7/2007 (01:08)
KNOWLEDGE = POWER. BODY = TEMPLE. FOOD = MEDICINE. PREVENTION IS THE CURE. YOU ARE WHAT YOU ABSORB!
One person's food is another person's poison.
Celiac Disease: An autoimmune reaction from eating gluten grains: wheat, rye, barley and contaminated oats=nutrient deficiency=cancer. Have 1 of 300 symptoms? bit.ly/cdsymptoms
CD stories: bit.ly/cdstories
My son's doctor made us go to therapy too. She thought depression was an issue since he had no affect/facial expressions. Always seemed sad and tired.
It can be written off on taxes here (the difference that is). However you must be able to itemize your medical expenses which would be someone making 50K a year would need to have $3750 in expenses before any deduction is allowed. I have not looked into it if we need to have a medical diagnosis since his doctor recommended it.
I tell you we have saved money in some situations. At the water park where food is super expensive we pack our own and were given an exception to the rule.
I haven't had much time to read over everything, but autism and Celiac connection has been in almost every book that I've read.
I'm at work now, so I'll post more later.
Holy cow Amandison2000. You guys have really been thru a lot! I wish my parents were more interested in finding out what was wrong with me as a kid instead of telling me my being sick was all in my head and taking me for counselling! I'm really glad to hear everyone is doing so well on the GF diet. It's not the best diet in the world, it isn't the cheapest, but it works! You can't beat that. Thank God we don't have to take medications or anything else. Controlling my diet to be healthy and pain free is just fine with me.
Not sure if you read any other postings in our team, but autism is high in celiacs, as is schizophrenia, arthritis and depression. Sounds like your son probably does have autism, but is thriving on the GF diet. Good for him!
Just over the past couple years, here is Canada we have been able to claim our diet products on our taxes under "medical expenses". We can't claim the price of the product, but what the difference is between our bread, for example, and a loaf of regular loaf of bread. So, if I purchase a GF loaf of bread that is made with Flax Seed and it cost me $6.95, and a regular loaf of Flax Seed bread is $2.19, then I claim the difference of $4.76. I keep my recipts for the year in one spot so I can find them (at least most of them!). I claim all my breads, pizza crusts, mixes I might buy, buns etc. I don't usually claim my pastas, as I find I can buy them on sale for .99 per package which is cheaper than regular pastas. I then stock up on different types of pasta: elbow macaroni, spaghetti, lasagna noodles etc. See if you can find out any info in your area to claim the products on your taxes.
Everything you said is very valid and trust me, I've thought of everything.
"He has the inability to digest nutrients, but I don't know why" says the GI doctor he saw. He has been poked and prodded since he was 14 months old with every test coming up negative INCLUDING the GI blood test which was done a couple of years ago. He has seen several specialists including a neurologist after a seizure. He has been to the Weisesman Center in Madison. For awhile now they thought he was autistic so the development pediatric specialist told me to try it the GF/CF diet. People fly in to see this doctor from all over and she told me that this is the first case EVER that she has suggested something alternative due to his GI problems. He has been tested for allergies in everything and it all came up negative. I immediately started reading every book that I could and we decided that as a family we will have a GF HOUSEHOLD. Why the whole family? Because it's not fair to tell our 5 year old......sorry huh we are having pizza and you aren't. Instead everything in the house is GF and we all eat the same stuff.
Now if I go out to dinner to I eat GF......NO! Just our household is GF. Yes it is expensive! Our grocery bills have doubled! My older son still eats hot lunch at school so he feels special. My younger son feels special because his snack at school is different than everyone else's.
As for the autism.....he was tested AFTER the GF diet and scored 1 point lower that what was necessary to officially put him on the spectrum. He has started talking, expressing himself, he is no longer purple (in the face), he only needs 9 hours of sleep now instead of 15, he has gained weight and most of all he no longer vomits daily and no longer has diarrhea on the upwards of 7 times a day.
My hubby has colitis and we've found a GF diet and casein free diet has helped him reduce those symptoms.
As for testing...Spencer was tested and it came out negative. Will we put him through the torture of reintroducing gluten just to have him re-tested...NO! My husband isn't getting tested either. He knows what makes him feel better and what makes him sick and he's going to stick to that.
Hi and welcome Madison2000.
I would keep asking your doctor for a referral to a specialist for your husband and son. I was sick my whole life and no one believed me that there was something wrong with me. I finally got fed up people thinking it was all in my head not listening to me. I forced my doctor to finally give me a referral and she did. I was diagnosed just before I turned 23.
I'm not sure if you realized as yet how expensive the diet is to stay on, and with a whole family on the diet will be extremely expensive. Even if you save your receipts of GF purchases, you might not be able to claim the expenses on your income tax without diagnosis from a doctor. I still can't believe people would go GF just because! If I had a choice, there is NO way I'd be on this diet if I didn't have to be. I would love to bite into some very fresh whole wheat bread! Yum.
Why do you think your family needs to be on a gluten free diet? What kind of symptoms? How old is your son and is he short and chubby for his age? If you do get a referral, being on the GF diet is the worse thing they can be on as it will prove a negative for gluten sensitivity! They need to be on the a regular diet before they get tested. There is a blood test they can now perform to determine whether or not they are sensitive to gluten. I am in Ontario and they have the blood test here. If it is available in your area, you also might have to pay for the blood test, then the specialist may still do the biopsy to get a "true" reading. Do you want to put your son thru that??
All the best to you in reaching your goals.
My family recently went GF due to my own suggestion. Doctors are dumb and refuse to believe me that my son and hubby are Celiacs so I'm just learning everything to keep our house completely GF and lose weight at thes same time.
I did my sparks page, but for some reason I lost everything before I could hit save. I'll update it later and you can "meet me". I look forward to being a part of this group.