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The Results Are In...

goldyjlox

By goldyjlox
in Coping with Celiac Disease

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goldyjlox Contributor
goldyjlox
Posted

I got my resutls today and turns out I have Severe Celiac Disease and my body is showing signs of early Osteoporosis. Not that I have this but I need to change my diet or I could have it. He said my Villa were flattened, I dont eat hardly and Gluten so I am shocked by this. He also wants me to go off Dairy for awhile and let my body heal. I have never had any problems with dairy and I do consume it alot. But he did say I could have that small amount in my tea still. So I have alot to learn now and I am totally lost and ned to do alot of studing. He actually suggested I research this site instead of buying a book, but I am interested in getting a book or two as I have small children and dont always get time on the computer. CAn anyone suggest any good books?? I am thinking of ordering the "living gluten free for Dummies" Also is there any cheat guides that tell you what products in the grocery stores are gluten free??? I live in a small town and there is not alot of opportunity to shop. I stopped by a Whole foods today and they had alot of stuff but I did not buy anything as I did not get to my appt. at that time. Oh and also what age did you get your kids tested?? Mine are 3 1/2 and 11 months but the doctor said that there was no rush to get them tested. I was thinking of adding the gluten free diet to theirs are it probably wouldnt hurt.

Thanks.

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cyberprof Enthusiast
cyberprof
Posted

Hi Goldy - Great Name!

Welcome! I'm sad that you've got a severe case but your doc sounds marvelous, compared to mine and other stories I've heard here. It's great that he recommended this site, too!

Living Gluten Free for Dummies is a great way to get started if you want a book. Peter Green M.D. also has a good celiac book that you could read. The Gluten Intolerance Group GIG publishes a "cheat guide" notebook.

I don't think that there is any risk in putting your kids on a gluten free diet, it may help them to learn that way of eating and not miss it later. The only disadvantage is that you would have to put them ON gluten to test them, and that might not be a fun experience, but you can cross that bridge when you get to it. If you think of how sick you are, what I've heard is that kids can get much sicker. My one IRL friend whose daughter was diagnosed at around age 3 said that her daughter was close to dying she was so sick.

I hope you feel better soon. I still put milk in my tea (I can't live without my English-style hot tea in the morning with milk and sugar) right after diagnosis, although I gave it up otherwise for 6 months. I'm ok with a bit more now.

I got my resutls today and turns out I have Severe Celiac Disease and my body is showing signs of early Osteoporosis. Not that I have this but I need to change my diet or I could have it. He said my Villa were flattened, I dont eat hardly and Gluten so I am shocked by this. He also wants me to go off Dairy for awhile and let my body heal. I have never had any problems with dairy and I do consume it alot. But he did say I could have that small amount in my tea still. So I have alot to learn now and I am totally lost and ned to do alot of studing. He actually suggested I research this site instead of buying a book, but I am interested in getting a book or two as I have small children and dont always get time on the computer. CAn anyone suggest any good books?? I am thinking of ordering the "living gluten free for Dummies" Also is there any cheat guides that tell you what products in the grocery stores are gluten free??? I live in a small town and there is not alot of opportunity to shop. I stopped by a Whole foods today and they had alot of stuff but I did not buy anything as I did not get to my appt. at that time. Oh and also what age did you get your kids tested?? Mine are 3 1/2 and 11 months but the doctor said that there was no rush to get them tested. I was thinking of adding the gluten free diet to theirs are it probably wouldnt hurt.

Thanks.

happygirl Collaborator
happygirl
Posted

There are a lot of good things about your post.

1. You have a firm diagnosis...no more wondering.

2. Your doc suggested this site. :)

I would highly recommend the book listed in my signature. Its absolutely wonderful.

All first degree relatives should be screened via bloodwork...parents, kids, siblings. Your 3.5 year old is old enough for reliable testing. I'd have it done. Make sure you get the full panel run. Also may be worth running the gene test on them, so you know if it is a possibility (genetically pre-disposed or not) in the long run.

miles2go Contributor
miles2go
Posted

1. Breathe.

2. You're in a safe place with this website.

3. Grieve your former diet, it's a learning curve and after a while it will become second nature.

4. Everyone will think you are weird, but you don't have to tell them if you don't want to.

5. The kids won't even notice.

6. There's this cool book called the "The Ultimate UnCheese Cookbook: delicious dairy-free cheeses and classic "un-cheese" dishes"/ Jo Spepaniak.

:)

Margaret

gfpaperdoll Rookie
gfpaperdoll
Posted

your children will definitely be healthier on the gluten-free diet, no need to feed them gluten until their villi flatten!!!!! Not a good idea.

Not a good idea to cheat on dairy - especially when the villi are flattened, I am sure that you can find something else like almond milk or something... You will read in most of these books how bad dairy really is for you. & you do not need dairy to build strong bones, that is just a saying that we all bought into... Also, you do not need soy.

I recommend a couple of books, Dangerous Grains, by James Brady MD & Ron Hoggan, & The Paleo Diet & Eat Right for your blood type (not gluten-free but helpful if any problems with other food intolerances), in addition to the books that were already recommended to you. They are all excellent. Another book that I like - it is not a gluten-free book but is a good refresher on nutrition is the book "Super Foods" by Steven Pratt, MD.

Also just a suggestion but I highly recommend that you go more Paleo - whole foods & not eat the replacement grains for at least 6 months to a year.

Guest j_mommy
Guest j_mommy
Posted

Great for you to finally know!

Yes I would have your 3.5 yr old tested...I had my son tested at 2 and he's neg. but he's gluten light...no gluten at home!

I would also recommend...Living gluten free for Dummies and Celiac Disease: a Hidden Epidemic(I bought them togther off Amazon for 30 for teh pair!)

Good Luck!

goldyjlox Contributor
goldyjlox
Posted
  • Author

I think that so far I am doing well with no gluten, I have been writing down everything I eat so that I can keep track of any gluten I may get. I am failing at the no dairy....its in everything also, I have researched some and found some butter that it dairy free... I beleive its called Fleishmanns, and Earth Balance and also Nucoa....not sure where I am going to find that here in our small town. I am going to make an appt with the dietition on monday and see if she can help me. Any good non dairy milks that you can suggest?? I am a HUGE milk drinker, so this is going to be more difficult to drop then the gluten.

Thanks.

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hathor Contributor
hathor
Posted

I won't repeat the great advice you've been given. I just wanted to add that Whole Foods has a list of gluten free foods they carry. Just ask at the customer service desk.

If you look at the product area on this web site, you can order guides to what is gluten-free or not. I have the Clan Thompson books, but I find I don't really use them much.

Better than any list, I think, is getting into the habit of reading labels. The first few times you are in the grocery store it will take forever, but that can't be helped. Contact manufacturers if you aren't sure.

Be wary of any item that says it is manufactured on the same equipment as wheat. Some seem to have problems with those. But realize that these labels are voluntary. If you do find you are reacting to a food without such a label, check it out.

You do know not to eat oats, right?

Be sure to get rid of any wooden items in your kitchen that came into contact with gluteny food; apparently it is impossible to wash the stuff completely. Avoid cross-contamination, like gluteny crumbs in the toaster or the PB. Don't lick envelopes (the glue might contain gluten). Check out all medicines and supplements you take -- there is no labeling requirement similar to food so you may need to ask us or contact manufacturers. Finally, I think it is wise to check your personal care items for gluten. I just realized 10 days ago I had been smearing wheat on my hair. No it doesn't absorb up there, but it gets on my hands, my hands go in my mouth, etc.

There are plenty of milk alternatives -- soy, rice, almond, oat, and hemp being the ones that come to mind.

hathor Contributor
hathor
Posted

Here's a link that will help you with label reading:

https://www.celiac.com/st_main.html?p_catid...-51107454617.e3

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