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cinda

By cinda
in Coping with Celiac Disease

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cinda Rookie
cinda
Posted

I am so frustrated. For the second time in two weeks I have gotten sick, and for the life of me I can't figure out how. Granted I am pretty new at all this. I am reading labels, and printed off the forbidden list. I have been being so careful. I have used pam cooking spray and it has never bothered me before. I read the label. Did i miss something? My husband thinks it is because I am still detoxing and I went 7 hours without eating anything, by then the headache was there. The fuzzy head, and bad bad tummy, so sick, I had to lay down. Seems each time is more intense than the last. I took 2 ibuprofen without even thinking. I got sicker. Yes I had eaten by this time. Even drank a half of a coke thinking my Blood sugar might be low. It is the same symptoms everytime.. just more intense. I was so sick to my stomach and woosy I could barley crawl into my bed from the couch. The only difference is i dropped 2 pounds and I'm not bloated this morning. The usual after effects are there I feel hungover and groggy and so sore, everything hurts, light headache waiting to come on full force. Any advice would be wonderful.

cin

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KaitiUSA Enthusiast
KaitiUSA
Posted

How long have you been gluten free? For some people it takes a while to feel better. For me it took 8 months to get back to normal... however I did have improvement well before the 8 months.Some people may see an improvement sooner than that and some it may be longer.

Have you changed things such as perfumes, hairsprays, soaps, shampoos, makeups, nailpolish, and things like that which can easily get into your digestive tract?

If you would like some lists I have you are welcome to email me and I can send them to you. Some of the lists are very extensive and make life alot easier.

cinda Rookie
cinda
Posted
  • Author

I'm into my third week now gluten-free. So basically I might be still kind of detoxing? I haven't switched makeup, hairspray or perfume, I'm trying to be very careful. I use dove soap and I wash my hands constantly. I do feel so much better already. Such a huge improvement. I guess that is why it seems I get sicker. It is so much more intense. My dietician told me it will take up to six weeks for the gluten to get out of my system. I thought tho since I have been feeling so good it would continue.

I would love any lists you have that would help me. I am in my learning phase still. Hubby says "mourning phase" lol. I just hate being that sick and not really being able to place it. It is so frustrating.

Thanx

cin

KaitiUSA Enthusiast
KaitiUSA
Posted

You should consider switching makeup and products as well because traces can easily get into your system.

The lists I send may be able to help you out a bit with that.

It can take alot of time to feel better depending on how much damage is done and other things so you have to give it time.

SherriRoy Newbie
SherriRoy
Posted

I hate to put a damper on things, but your symptoms may take a lot longer to go away. I've been doing it for two and a half years and I have never improved on the diet. Although to give you a boost, i'm the only one that I've heard not been helped on the diet. Give it time, and try to be patient.

Did you get rid of all your old pots and pans? even cleaning with soap can still leave gluten imbeded in the surface of them. New spatullas everything...go all the way if you can. With the celiac diet I find you do go hungry a lot. There is a lot less fiber and carb that feel like they take up room in your body. You'll get used to that I guess.

As to labels, one of the things that caught you might be sensative to are additives. For some reason celiace get more sensative to food...especially a lot of the chemicals they use to preserve them. Just a suggestion..maybe try to elliminate a few to see.

I hope things get better. I swear everything is a test of patience, but I believe you will be benefitted.

I hope I will one day too:)

Sherri

bluelotus Contributor
bluelotus
Posted

I noticed you all mentioned perfume - what perfumes are gluten-free? I have changed my hair products, etc, but not perfumes. hmmmm. sorry for the sort-of change in subject.

As mentioned by everyone else, be careful of contamination. Even foods that don't list gluten as an ingrediant may not be gluten-free . There are definitely plenty of examples (like OceanSpray's trail mixes), but I know KatiUSA has posted a list of companies elsewhere that declare all gluten containing ingrediants. You should also consider emailing/calling all companies of foods you eat regularly to double check their contamination policies.

Bette Explorer
Bette
Posted
I have used pam cooking spray and it has never bothered me before. I read the label. Did i miss something?

The Pam spray caught my attention. I just pulled some out to use today, it was the "All Natural- Extra Virgin Olive Oil" and was perplexed and decided not to use it because the second ingredient listed says " grain alcohol". I haven't had time to try and verify if this is gluten free or not, but grain alcohol sounds suspicious. Can anybody recall if this has been verified?

I am going on my 6th month gluten-free, and I also started getting very sick with your same kind of symptoms,especially after about the 2nd-3rd week gluten-free. It does get better, but I react now with more intense symptoms when I have been glutened. I know I am on the right track, but now I have other intolerances that are cropping up. Hang in there ;)

Bette

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lorka150 Collaborator
lorka150
Posted

Pam's fine.

It's corn.

cinda Rookie
cinda
Posted
  • Author

thanx everyone for all your help... i'm trying to hang in there and be positive... headache finally went away.. i don't want it back so i'm gonna try harder.... helps to know i'm far from alone... everyone on here is so nice .... and the help is awesome!! and kaiti thanx again for the lists.

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    • rei.b
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      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
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