nettiebeads

I am new to the gluten-free/cf diet. I have been following the diet very carefully and cautiously for almost a week now. I cannot return to eating gluten and dairy as it has caused many health issues for me. anyway, i made bobs red mill gluten-free whole grain bread today. Had half a slice. 10-15 minutes later, had stomach cramps and diarreah. Has anyone had a similar experience? could it have been the fiber content?

Are you using "post" celiac utensils as opposed to pre-celiac utensils? I threw out all my wooden spoons, pitted plastics and anything that I was afraid couldn't be scoured completely clean of gluten.

I was diagnosed with celiac as a small child. I don't know how long I was on medication and a special diet for this, but the pediatrician eventually took me off the meds & diet, and said that I was 'cured'. That was about 50 years ago. I do know now that celiac is a chronic, lifelong disorder. Through the years, thankfully, I have displayed very few symptoms of celiac. I've had the alopecia areata for several years now, and is getting much worse despite the many potions & lotions the dermatologist prescribes. I know its difficult anyway to determine why anyone gets alopecia areata, but I was just wondering if it had anything to do with celiac. I wonder how much damage was done over the years, without being on the gluten-free diet. I do plan on starting the gluten free diet soon.

Thanks, y'all.

My daughter's m-i-l has alopecia. She doesn't have celiac, but HER mother has been diagnosed with celiac, but claims to "have a mild form". But since autoimmune diseases can be hereditary, I would think that there's a link.

I have been gluten free mostly eating fresh meat, salads, veggies, fruits, almonds and sunflower seeds, brown rice and just water to drink and I seem to be more constipated than before I started gluten free. I do very limited dairy, yogurt and minimal cheddar and swiss cheese maybe twice a week. Have not had a bowel movement in about 4 days now.

Has anyone else had this problem? Please let me know your experiences and what helped.

Thanks

Every now and then I take a small swig of M.O.M. (cherry flavor. Mint to me is awful), but only if I've been having problems for three days or more. My regular routine: Two fiber pills in a.m. and 2 in p.m. Raisins in my cereal. I find my two biggest no-no's are cheese and rice. Even rice products stop things for me. Lots of water. Lots of dried fruit - apricots and prunes and raisins are the best. You'll find out what's best for you through trial and error.

Not all of Zatarain flavors are safe. You do have to read the labels. Unfortunately I used up my last box so I couldn't tell you what I was using - I think it was Jambalya. I wouldn't worry about the soy - the women in Japan have a much lower incidence of breast cancer and their diet was based on soy - until it became westernized with our much greater ingestion of fats. As you heal, you may be able to digest dairy again. Celiac causes damage to the villi, and it is in the tip of the villi that the body produces the enzyme necessary to digest diary. After about three months of being gluten-free, try a little dairy product again like yogurt or mozzerella cheese. It was yellow cheeses that took the longest for me to be able to eat again.

Hope that helps some.

Annette

I doubt if the muscle patch would have something bad for you in it. Is there an 800 number on the box you could call and ask? You are lucky in that your dr. dx'd without all of the testing other than diet and he knew about celiac. Must have gone to the same university as my dr. did. I was dx'd via diet alone 10 yrs ago. One thing I could highly recommend is that you get yourself a set of Triumph dining cards. There's a link somewhere on this website. I don't travel without them and they have saved me many times. Are you taking any other OTC or prescribed meds that could contain gluten? What about toiletries, especially shampoo. There is wheat in so many places - even cosmetics! Anyhow, welcome to the board and I hope you find the source of your gluten soon.

Annette

so the rice crisps arnt gluten-free i though only the treats arnt

Anything with the word MALT is bad for us, (unless the malt is from a safe source which is rare. It would be stated on the label ie: rice malt). If the word MALT is byitself, it is made from barley.

I swear by L-glutamine. It really does work! I was accidentaly cross-contaminated awhile back but had been religious about taking the supplement and my recovery time was greatly reduced along with the symptoms. (even the irritability!) I would highly recommend taking it as a matter of course even after healing in case of accidental glutening or cross-contamination.

Annette

How was the beef flavored? Did they use teriyaki? Soy sauce anywhere? Even if the restaraunt itself didn't use soy sauce somewhere, beef is now processed with flavor enhancers and such to make it more tender and flavorfull. And who know WHAT is in that solution. (saw it on Food channel or Discovery. Can't remember which). And yes, the reactions to gluten can very in a person. Usually mine is delayed, but once I did have an immediate reaction.

Hope it passes quickly.

Annette

BUT FRUITY PEBBLES ARE OKAY >... right...

I can't remember, but as always read all labels. I'm pretty darn sure they are, but I buy the malt-o-meal dyna-bites - much cheaper. But I do buy the coca pebbles when I want to take a dessert to a gathering. I use them to make Rice Krispy treats.

Would it be bad to use a body wash by Aveeno that has oat flour in it?

I think the possibilities of cross-contamination with such a product would be too great to risk it. I stay clear of all toiletries containing gluten in any form.

Does it take longer for kids with Celiac d's bones to heal? Emmah broke her tiny little foot last night:( I have to go get her wheelchair in an hour. just curiose if anyone know????

TIA

Char

I don't think celiac should slow the healing - the thing is if she's eating appropriately and not triggering any responses to gluten, then her body will be absorbing all the nutrients like it should. But it will still seem like forever to her.

Annette

Check out this notation from the Kellogg's UK website (it's from a page listing Open Original Shared Link):

Please note that only the cereals listed above have been removed - although Kellogg Rice Krispies, Ricicles and Coco Pops contain malt flavouring they fall well within the international Codex Standard of 200ppm

All of those products contain malt, which has gluten. To my knowledge, the U.S. and Canada do not follow the Codex Standard and thus these cereals are not considered gluten free (or should that be "gluten safe?").

Michelle

Ok, let me tell you my story - it's a little long but I hope to save people by relating my mistakes - I USED to eat cereals with malt - no ill effects I thought at the time. Then after years of this I noticed numbing in my face and when I would get out of bed it felt like I was walking on stumps. Peripheral neurapathy - scary as I'm not even 50 yet. And persistent brain fog - I had even forgotten how to run the software at work, the same program I had used for 5 Years!! So after I joined this forum I finally decided to really clean up my act and eliminated ALL gluten, and even remote cross-contaminations in my house. The numbess disappeared after several months, I have more brain activity and don't sleep away my weekends anymore. My conclusion is that while malt may be considered "safe" by some standards (and I'm not terribly sensitive to gluten in the overt ways) I believe that the effect is cumulative - like mercury in fish. My two cents, but I will never ever ingest malt knowingly again.

Annette

I agree with Carla. But lots of times those with dairy problems can eat dairy later after being gluten free for awhile. You might want to go gluten-free for about three weeks and then see how you respond to cheese. But I would start out with a white cheese - it took me months before yellow cheese stopped bothering me.

I used to do that at the beginning when I first found out I had celiac. It gets better as you go along. Just hang in there.

I go there frequently myself. Lots of recipes can be made gluten-free with a little ingenuity.

Just an update, I finally got my cross-trainers for the aerobics/dance classes and I went with the New Balance.

Thanks everyone for all the suggestions/tips

You're very welcome and have fun!

Annette

It depends where the pain is. My DH-type rash hurt where the blisters were--itching and burning like crazy.

But if the pain is not on the surface, but underneath, (like a pinched nerve, but running the whole length of the nerve, say the whole arm if it's on the arm), then itmay be shingles. I've had shingles, and have to say that the rash part of it can look fairly similar to severe DH, but when I had a DH-type rash (it was never officially diagnosed), it was totally symmetrical on both arms. When I had shingles, it went from my neck all the way down one arm (along one of the spinal nerve pathways).

Either way--what a bummer.

Ooh, Ouchie wow wow! Thanks everyone; I'll talk to my boss; she's pretty much convinced that it must be celiac/DH since the drs in his area are without a clue as to what is causing his problems. (Now there's a big surprise!). Funny, but not.

Annette

Breakfast- I usually have cereal - malt-o-meal fruity crispy whatever. It's gluten-free (for now at least. I always check bags to make the ingredients haven't changed). Coca pebbles is safe too. Grits are okay. There's eggs and fruit. Some people have reported great success with the specific carbohydrate diet. You might do a search on that in this forum. I'm glad you're trying the gluten-free diet and I hope it works for you. I know of two people who are having digestive problems and I wish that they would try the diet for just three days even!

Best of luck!

Annette

Thanks everyone! I am looking forward to making jambalaya (Zatarain's) with smoked sausage - a favorite before going gluten-free!

One of my favorites too!

Annette

Annette,

I had DH with the blisters and the major burning feeling, DH usually is on knee's , elbows, buttocks, other places to like belt line and scalp.

I had it for years and doctors thought it was allergic reaction to soap or deodorant, so he gave me Dapsone, which I took for years, not knowing anything about Celiac.

I sure do remember the burning and itching, don'y miss it at all, but do remember.

I'm recently diagonsed with Celiac, after about a billion doctors.

I would recommend a gluten-free diet, I just started, so it's going to be frustrating sometimes, but this site here is a blessing for me

Allen

thanks. The next time my boss's d-i-l is in the office, I'll pull up some pics of DH and see if they look similar.

Annette

My boss's son has been having health problems for quite awhile, and specifically a rash with blisters that hurt that have not responded well to any treatment. I'm suspecting DH, and my boss is starting to think that too. I don't have DH but do have celiac, so I'm wondering if this could be DH? Any opinions?

TIA

Annette

Thank you, thats a good idea. It says on the form that increased sigA means active infection or increased antigenic load....but that isnt telling me much. I will call Monday and see what I can figure out. I haven't started the gluten free diet yet. I am going in for some blood tests on Mon or Tues. I will wait and then start it. I actually WANT to start it. Even if the tests are negative I am going to do it. I just know it will be better to have an official diagnosis. Especially in my case. My docs want to start a very toxic chemo drug called Cytoxan or IVIG treatments. I am getting weaker and weaker. My diagnosis is dermatomyositis. Inflammed muscles....with a rash.....little blisters....sounds like the celiac rash.....

I just want to feel better....

Thank you again!

Rachael

OOH, sounds like celiac disease to me. Why don't you go gluten-free the day of the tests? As soon as you get home even. There are lots of people on this board who haven't had the "official dx" but know that their body is better without the gluten. And by trying the gluten-free diet for three weeks, then reintroducing gluten to your system and monitoring all physical/mental reactions you are performing another test. It's the diet challenge and a valid dx tool. And some in the medical community think that it is the most reliable test there is! Try it, you might like the results! And it couldn't hurt! Please keep us posted - and don't do the chemo until after you try the gluten-free diet. If you're already weak, the chemo could seriously undermine what reserves you have left.

Hope you get the correct answers soon!

Annette

I've had floaters since I was a kid and way before celiac. Nothing has ever made mine reduce in number. But I've always been severely myopic. Don't know if that has anything to do with it.

Annette

Can those with nueropathies feel the body healing ? I was thinking this is why my arms started getting a fluttering feeling after being on the diet for 6 mths. I've had mild numbness in my hands for years.

And my tongue is now a deep red and my lips are a new shade of pink. Is this progress or just another food allergy ?

I caused my own neuropathies by ignoring that little four letter word "malt" in cereal. Took me a long time to develop it, but after eliminating that from my diet it seemed that my muscles would "jump" like the nerves were coming back alive.

As for the deep red tongue and pink lips - probably iron in your system that your body couldn't absorb before! Pink lips are a sign of health, blue and pale lips usually mean deficiencies.

Annette

Oscar Mayer, which is owned by Kraft, has a product called "Turkey Smoked Sausage" that is not listed on their gluten-free product list. However, by searching around the oscar mayer website, I found a place where you could submit a question, so I asked if it was gluten-free. It directed me to the PDF of Kraft foods that says that if it contains gluten, it would be clearly listed on the label, which it is not. I've read on here before that that is Kraft's policy and since Oscar Meyer is owned by Kraft, I figured that would be the case as well.

As for why it isn't listed under the gluten-free product list, I can only guess that this is a newer product and it isn't updated.

Would you risk it?

Sure.