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New To Gluten Free

taterhart

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taterhart Newbie
taterhart
Posted

Hey everyone. I'm new and have a few questions/want to vent without being told I'm crazy!

Our short story is that all of our kids have had stomach issues forever. Each of them had month long bouts of diarrhea as babies and toddlers, with stools that burned their skin off. Then, as they've gotten older (from about 3 on) the three bigger kids have had chronic constipation. Now my just turned 1 year old is dealing with constipation. This all just sounds too much like coincidence to me, but our pediatrician prescribed Miralax everyday for the rest of their lives! The end! I told her that I wanted to know WHY they were suffering, and she said "not enough water and/or fruits and veggies." Well, that just doesn't fit our MO.

So, last week, at the recommendation of a few friends, I got and read "The Gluten Connection" and am currently reading "Dangerous Grains".

Everything in those books is about ME.

I have vitiligo (autoimmune); mood swings; anxiety, have suffered from 2 pretty serious depressions; am deficient in Vit. D and Bs; have enamel damage on all of my molars; have sleep issues more often than not; suffer indigestion, bloating, and gas (although not severe enough that I thought something was wrong. I thought it was normal to have those issues.); in the last 3 months my menstrual periods have gone crazy (Dr. ran tests, my hormones were normal. She said I may be pre-menopausal. I'm 31!); and have had this weird rash on my face for the last few months. I haven't had time to get to the doctor, as I stay home with 4 kids ages 7.5 to 1 year and my husband travels for work. But the rash started on one side of my face as a pustule. I thought it was a pimple, but it kind of burned and itched. Now it has spread to the other side of my mouth (symmetrical) and a little spot right inside my nostril that itches and hurts. It is a patch of small blisters. Sometimes it is inflamed, sometimes it's not so bad. Does that sound like DH? I've looked up the pictures online, but my blisters have never gotten that big. If I put hydracortisone on the patches, they seem to get smaller, but have never gone away in the months since they arrived.

I started this journey to help my kids, but now I'm thinking it starts with me. I have been gluten free for 6 days now. The first days were BAD. My stomach was churning like butter, and I felt WEIRD, like almost out of body?!?! Then, on day 3, I felt horrible. Is it possible to get glutenized after only 3 days? I toasted gluten-free bread in our toaster and had 2 BLTs, and had the worst bloating/indigestion/stomach cramps I've had in a long time. I felt really great last night and so far today, but I've also not had any dairy, just in case.

Most people around here think I'm crazy, especially since we were initially doing this for our kids. But I don't think I'm crazy. I think I'm lucky as hell to have found this, b/c I think I may actually have celiac. Which is scary.

(PS, my daughter has psoriasis of the fingernails, which is autoimmune, and she has terrible knee aches. My son has canker sores, and some pretty serious behavior/anger issue. All 3 of my older kids complain of stomach aches EVERY DAY. We just assumed they were complaining like kids do. Now I'm convinced we were wrong. Especially since the doctor confirmed that my 4 year old was completely FULL of feces through X-ray. All the way full. And my oldest went to the ER when he was about 4 b/c he had fever, distended/tender belly and pain: constipated to the point of illness. Eating tons of fruits and veggies and tons of water doesn't help. They eat very little junk, only drink water except for milk at one meal, no soda, tons of exercise.)

I am not particularly interested in eating gluten to get tested. The tests are CRAZY expensive, and there are 6 of us. Plus I figure if we go gluten free for a period of time, and then eat it again and get sick, we know everything we need to know. My only reservation about this is that if there aren't more confirmed cases of celiac disease/GS, doctors won't look there. What do you think?

Thank you for listening/reading. This all feels like a dream. This doesn't happen to me and my family! This is something you read about!

~Tasha

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Razzle Dazzle Brazell Enthusiast
Razzle Dazzle Brazell
Posted

Hey everyone. I'm new and have a few questions/want to vent without being told I'm crazy!

Our short story is that all of our kids have had stomach issues forever. Each of them had month long bouts of diarrhea as babies and toddlers, with stools that burned their skin off. Then, as they've gotten older (from about 3 on) the three bigger kids have had chronic constipation. Now my just turned 1 year old is dealing with constipation. This all just sounds too much like coincidence to me, but our pediatrician prescribed Miralax everyday for the rest of their lives! The end! I told her that I wanted to know WHY they were suffering, and she said "not enough water and/or fruits and veggies." Well, that just doesn't fit our MO.

So, last week, at the recommendation of a few friends, I got and read "The Gluten Connection" and am currently reading "Dangerous Grains".

Everything in those books is about ME.

I have vitiligo (autoimmune); mood swings; anxiety, have suffered from 2 pretty serious depressions; am deficient in Vit. D and Bs; have enamel damage on all of my molars; have sleep issues more often than not; suffer indigestion, bloating, and gas (although not severe enough that I thought something was wrong. I thought it was normal to have those issues.); in the last 3 months my menstrual periods have gone crazy (Dr. ran tests, my hormones were normal. She said I may be pre-menopausal. I'm 31!); and have had this weird rash on my face for the last few months. I haven't had time to get to the doctor, as I stay home with 4 kids ages 7.5 to 1 year and my husband travels for work. But the rash started on one side of my face as a pustule. I thought it was a pimple, but it kind of burned and itched. Now it has spread to the other side of my mouth (symmetrical) and a little spot right inside my nostril that itches and hurts. It is a patch of small blisters. Sometimes it is inflamed, sometimes it's not so bad. Does that sound like DH? I've looked up the pictures online, but my blisters have never gotten that big. If I put hydracortisone on the patches, they seem to get smaller, but have never gone away in the months since they arrived.

I started this journey to help my kids, but now I'm thinking it starts with me. I have been gluten free for 6 days now. The first days were BAD. My stomach was churning like butter, and I felt WEIRD, like almost out of body?!?! Then, on day 3, I felt horrible. Is it possible to get glutenized after only 3 days? I toasted gluten-free bread in our toaster and had 2 BLTs, and had the worst bloating/indigestion/stomach cramps I've had in a long time. I felt really great last night and so far today, but I've also not had any dairy, just in case.

Most people around here think I'm crazy, especially since we were initially doing this for our kids. But I don't think I'm crazy. I think I'm lucky as hell to have found this, b/c I think I may actually have celiac. Which is scary.

(PS, my daughter has psoriasis of the fingernails, which is autoimmune, and she has terrible knee aches. My son has canker sores, and some pretty serious behavior/anger issue. All 3 of my older kids complain of stomach aches EVERY DAY. We just assumed they were complaining like kids do. Now I'm convinced we were wrong. Especially since the doctor confirmed that my 4 year old was completely FULL of feces through X-ray. All the way full. And my oldest went to the ER when he was about 4 b/c he had fever, distended/tender belly and pain: constipated to the point of illness. Eating tons of fruits and veggies and tons of water doesn't help. They eat very little junk, only drink water except for milk at one meal, no soda, tons of exercise.)

I am not particularly interested in eating gluten to get tested. The tests are CRAZY expensive, and there are 6 of us. Plus I figure if we go gluten free for a period of time, and then eat it again and get sick, we know everything we need to know. My only reservation about this is that if there aren't more confirmed cases of celiac disease/GS, doctors won't look there. What do you think?

Thank you for listening/reading. This all feels like a dream. This doesn't happen to me and my family! This is something you read about!

~Tasha

Umm I will get to the point. I would definitely do the strict gluten free diet. I think you could be onto something and don't let the doctors or the ppl around you deter you. Also you will learn a lot by continuing to browse this forum. Crosscontamination is still an issue gluten-free. That means utensils, using same toaster as had been used with gluten-filled bread and scratched pans and anything that can hide traces of gluten.

It is very common that the first few weeks are bumpy so it can be kind of deceptive. You can find your body seems to go haywire and you are reacting to everything. You can discover more intolerances and allergies you hadn't realized because your body was so exhausted from attacking gluten. It is like you just let go of livewire and your body is shaking and writhing. So give it time. It may just be worth it. If you find you get better overtime and reintroduction sickens you, you have your answer. I tried to get testing too and became very I'll in many ways so I don't blame you for not wanting to go back on it, since it can be worse. I think I would go ahead and try gluten free with the kiddies who have problems and see how they respond.

nvsmom Community Regular
nvsmom
Posted

I started this journey to help my kids, but now I'm thinking it starts with me. I have been gluten free for 6 days now. The first days were BAD. My stomach was churning like butter, and I felt WEIRD, like almost out of body?!?! Then, on day 3, I felt horrible. Is it possible to get glutenized after only 3 days? I toasted gluten-free bread in our toaster and had 2 BLTs, and had the worst bloating/indigestion/stomach cramps I've had in a long time. I felt really great last night and so far today, but I've also not had any dairy, just in case.

Most people around here think I'm crazy, especially since we were initially doing this for our kids. But I don't think I'm crazy. I think I'm lucky as hell to have found this, b/c I think I may actually have celiac. Which is scary...

...Thank you for listening/reading. This all feels like a dream. This doesn't happen to me and my family! This is something you read about!

~Tasha

That is EXACTLY how I found out that I have celiac! My oldest son has mild Aspergers (autism) and these kids often have leaky guts. I did a bit more reading and found out that his stomachaches, constipation and short stature (he is 9 and his 7 year old brother is now taller :( ) could be symptoms of celiac. I had his blood tested (ttg Iga, EMA) and these came back negative.

Then I started thinking about me. I've always had stomach issues, migraines and I also have another autoimmune disease. With a friend's encouragement, I was tested and my numbers were off the chart (never bothered with biopsy). Surprise, I'm a celiac.

Tomorrow I am taking my three boys into the doctor and asking for blood tests (and re-tests) as well as vitamin tests. I strongly suspect that my 9 and 5 year old have it; and worry about my 7 year old since he would live on bread if we let him. Regardless of the blood and vitamin results, I am easing my entire family into a gluten-free diet by the fall; poor hubby will have to get his gluten hits while out of the house. lol . I don't want to biopsy my kids to double check if they are celiac; if a diagnosis is important to them when they are older, they can do it then with a gluten challenge. I'll just proceed with the understanding that going gluten-free can't hurt them, but including gluten in their diets could. KWIM?

HUGS It's annoying and upsetting to be faced with this, and awful to think we passed it on to our kids, but at least we can help them get better and prevent further health complications just by altering their diet...all of which I will try with or without an official diagnosis for them.

Hang in there. The withdrawl isn't fun but seeing improvement is. :) Best wishes.

editted to add that you probably shouldn't use your old toaster. I've heard that cross contaminates (cc) food easily. You'll need a new gluten-free one, or if it's a toaster oven, use tinfoil every time.

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