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Just When I Thought I Was Doing Better....

Lawspike

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Lawspike Rookie
Lawspike
Posted

As if it is not bed enough that I am unable to consume gluten, casein, soy, eggs and honey... I am awaiting further blood work to find out the rest. I had been doing really well with my scalp DH (since beginning my elimination diet) and have been gluten and everything else free for two weeks (this is week three). Last night was day two of the worst breakout on my forehead and scalp I have had in months. I am scratching at my skin, from head to toe, like a dog with fleas. I came online to research my latest symptoms, because after eliminating everything but water... I just can't seem to pinpoint what the hell is causing this all of a sudden outbreak.

My damn hair products ALLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLL contain wheat. My soaps ALLLLLLLLLLLLLLLLLL contain wheat. My body lotions ALLLLLLLLLLLLLLLLL contain wheat, amongst other things I cannot tolerate at this moment. UGHHHHH

I just threw out about $400 worth of products in the bathroom.... and spent the morning at Babies R Us and Whole Foods, buying California Baby body wash, lotion and shampoo and Shikai shampoo and conditioner. I ordered their mousse online....

I then took a shower for what seemed like an hour. I made sure to wash off any last damn bit of gluten.

I feel like instead of learning by education, I am learning by poisoning... frump........

I know this HAS to get easier... right?!

Oh, and my Celiac support group here in TN, is less than adequate, informative or supportive. It seemed like everyone there could eat soy, eggs, milk and everything else I could not. I am not sure if I will attend this month's meeting. Anything they discussed, I already learned on here, or other online researching. :(

I really want to cry right now... and I feel like a tool for throwing myself this pity party - but ...alas, I can't seem to resist.

Oh, and I think I got sick from Craisins as well.... It is the only non organic/natural thing I have eaten and apparently it has tannins, which I did not know. I never drink red wine for that reason.. I always get sick from it... Oh, and I got violently ill from Woodchucks Hard Apple Cider. I am hoping the booze thing was just because my stomach is such a wreck right now.... :angry:

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elle's mom Contributor
elle's mom
Posted

Sorry, lawspike, to here about your troubles. Maybe it wasn't the tannins, you should call the company on the craisins......I have a friend who said she got glutened by craisins due to a coating process or something.

Lawspike Rookie
Lawspike
Posted
  • Author
Sorry, lawspike, to here about your troubles. Maybe it wasn't the tannins, you should call the company on the craisins......I have a friend who said she got glutened by craisins due to a coating process or something.

You know, I was in COSTCO when I called them! I wont buy anything I am unsure of, so to be safe, I called. They assured me they were gluten free and such. I was researching this online, and found some other celiacs who got sick from them, and some woman (or man - not sure) posted this thing about the tannins, etc. If it is not the gluten... I was assuming it was that... :(

thanks!

Lisa Mentor
Lisa
Posted
Sorry, laws pike, to here about your troubles. Maybe it wasn't the tannins, you should call the company on the craisins......I have a friend who said she got glutened by craisins due to a coating process or something.

Ocean Spray Can Raisins are gluten free and are not "coated" or something. That "something: would have to be listed on the ingredient listing or allergen statement. Cranraisin Trail Mix and Cran Raisin Chocolate Covered cranberries MAY. Read the labels :)

Do Ocean Spray

ravenwoodglass Mentor
ravenwoodglass
Posted

It is hard at first and I think many of us fully understand your frustrations. There is so much to learn when starting out. Your in the right place to vent. I hope you feel better and that your DH flare calms down soon. I had the same experience with my shampoos and such and it is tragic to have to toss so much. I donated stuff that was unopened but since most had a use or two out of it I had to toss out much more than I could donate. It does get better.

Lisa Mentor
Lisa
Posted

While checking on the Cranraisins, I found this great, current list. It's not always good to rely on lists for products (because they change frequently), but it sure is helpful in the beginning.

Open Original Shared Link

The Fluffy Assassin Enthusiast
The Fluffy Assassin
Posted

It gets easier, and better, almost on a day by day basis. So you have that to look forward to, right?

Oh, and my Celiac support group here in TN, is less than adequate, informative or supportive. It seemed like everyone there could eat soy, eggs, milk and everything else I could not. I am not sure if I will attend this month's meeting. Anything they discussed, I already learned on here, or other online researching. :(

Yeah, the group here had food at the first meeting I attended, and every bit of it had dairy in it. I think it's good to participate in order to be a resource for other people who might not have done as much research, but it's better not to expect too much from them.

I'm considering finding or founding an Asperger's support group. At least some of them would have some interest or knowledge of the Gluten-free Casein-free diet.

Good luck to you. I promise that things will get better.

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dilettantesteph Collaborator
dilettantesteph
Posted

I learned by a lot of poisoning too. One thing I learned the hard way. Some celiacs are more sensitive to trace gluten than others. Just because some eat a ton of it without problems doesn't mean that you will be able to. Just because someone says it is gluten free doesn't mean that it is gluten free enough for you. Good luck.

darlindeb25 Collaborator
darlindeb25
Posted

I agree with Steph. Any product can be listed as gluten free, as long as there is less than 20ppm of gluten in it. Some of us can't tolerate 5ppm. So, I guess you will have to experiment, just like we have, trial and error. :(

My support group is much the same. They always have food, at every meeting. When we have a meal of some sort, usually catered, nearly everything has cheese on it...dairy intolerance doesn't seem to matter. Most every meal is Italian of some sort, so there is nearly always tomato in everything too, which leaves the nightshade intolerant out. I did complain once, and was told they felt bad and would try to improve on the situation...hasn't happened. The last catered meal was the same.

One meeting we had pizza, back when I didn't realize why things bothered me. That pizza made me so sick, I was running to the bathroom as soon as I got home, from one tiny piece. I haven't had pizza since that day. That was over 4 years ago.

Often times, we have interesting speakers, Dr. Peter Green being one of them, so you learn from the meetings, even if you can't eat. It's also nice to be with other gluten intolerants, who understand what gluten is. ;)

Lawspike Rookie
Lawspike
Posted
  • Author

Thanks, everyone!

I totally agree! I am learning so much each day... today, I got to call make-up manufacturers to see how much money I will spend replacing all of my expensive beauty care crap///// that of course, ALLLLL has gluten!

The fun never ends!

I just purchased (and received) a product called Miracle Noodles. I found the ad on this website.... so far so good. They are some weird plant fiber. They fill you up for HOURS... Amazing!

lovegrov Collaborator
lovegrov
Posted

"Oh, and my Celiac support group here in TN, is less than adequate, informative or supportive. It seemed like everyone there could eat soy, eggs, milk and everything else I could not. I am not sure if I will attend this month's meeting. Anything they discussed, I already learned on here, or other online researching. sad.gif"

While I'm sorry you can't eat all these things, the meeting is for people who can't consume GLUTEN. It's not for people who can't consume gluten AND eggs, soy, milk, and everything else you can't eat.

This reminds me of 8 years ago when I went to a GIG conference and the glutenfreeda women were there demonstrating some yummy gluten-free substitutes. A woman in the audience complained that all the stuff they were demonstrating contained too much fat and/or salt for her. Their reply? We're here to show yummy gluten-free cooking, not salt or fat free cooking.

richard

Lawspike Rookie
Lawspike
Posted
  • Author
"Oh, and my Celiac support group here in TN, is less than adequate, informative or supportive. It seemed like everyone there could eat soy, eggs, milk and everything else I could not. I am not sure if I will attend this month's meeting. Anything they discussed, I already learned on here, or other online researching. sad.gif"

While I'm sorry you can't eat all these things, the meeting is for people who can't consume GLUTEN. It's not for people who can't consume gluten AND eggs, soy, milk, and everything else you can't eat.

This reminds me of 8 years ago when I went to a GIG conference and the glutenfreeda women were there demonstrating some yummy gluten-free substitutes. A woman in the audience complained that all the stuff they were demonstrating contained too much fat and/or salt for her. Their reply? We're here to show yummy gluten-free cooking, not salt or fat free cooking.

richard

Thank you for your thoughts. I will take those into consideration while I am navigating my way through this difficult time in life.

I will be sure to be more sensible about my frustrations with the lack of support I am finding in the state I live in. Celiacs suffer from many other intolerances (other than just GLUTEN). The support group for CELIACS that I attended, might have touched on some other common Celiac issues, other than just gluten. Those of us recently diagnosed, who are not as seasoned (as yourself, perhaps), tend to be a bit frustrated with the lack of support, knowledge and resources!

Thanks for the advice.

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    • trents
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    • catnapt
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    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
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