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2.5 Weeks Into Gluten-Free - Now Feeling Weird...

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Hi Everyone,

I am new to the forum and new to being Gluten Free and feeling really weird as of yesterday.

Here is my story:

Childhood history of various illnesses and oversubscriptions of antibiotics (uncle worked for pharmaceutical co - they were given to me like candy)

I have had lots of yeast infections in my life.

Always felt tired and bloated (as in puffy, not gastro distress) from pasta/bread and would gain weight easily from these products.

Terribly PMS and heavy periods. When I was low gluten for a period thru my life I noticed that these PMS symptoms were eliminated.

I have a thyroid goiter (benign nodules). Thyroid blood tests came back "normal" although I want to have someone else look at them and tell me if they are out of optimal range.

I have had a rash that could be DH (on my behind) for my entire life.

Dark circles under my eyes my entire life.

I have been grinding my teeth during sleep all my life.

Over the last year, I began suffering from severe neck/shoulder pain, insomnia, drenching nightsweats (one week before my period), felt sick in the evenings, low energy and every morning would wake feeling like I was "hungover" without having been drinking. I also had chronic yeast infections (with increasing discharge), brown mucous at the back of my throat, and swollen glands. Also, I would vaccilate between normal BMs, constipation and runny (pencil thin) stools.

Typically I ate very healthy in my 30's and am now 42. I ate tons of veggies, fruits, fish, meats but I would throw a piece of bread in there every once in awhile. No fried foods, not too many sweets, etc. And I am very athletic (although it was getting increasingly harder for me to do my regular workouts).

After a weekend of pasta/bread during a family reunion, I felt awful the week after so I decided I had had enough and was going to go gluten free. I did so beginning May 15th and have been free w the exception of two accidental glutenings (soy sc w/ gluten and a lotion w/ wheat germ) during that time.

But for the past week and a half I have been 100% off gluten. I have noticed some good things -- deep sleep, rash (DH?) improving, neck and shoulder pain improving, more energy, less mucousy,no pMS symptoms, noticed that I wasn't grinding my teeth as much and more. BUT as of yesterday, things changed and I felt dizzy, fatigued, the neck/shoulder pain is back and the teeth grinding is back. FYI, I have not completely gone off carbs -- I still eat brown rice and gluten free crackers, as well as brown rice english muffins so I don't think it is a reaction to no carbs.

My question to all of you who have been thru this is -- is it normal what I am experiencing? How long does it last? I take a multi vitamin plus omega 3's and turmeric daily. Also, just started probiotics (but I have eaten a lot of yogurt anyway), but should I be supplementing with anything else?

Thanks in advance for your feedback and support! Also, I just ordered the tests from Enterolab. Should get them anyday. Would love to hear your experiences with them as well.

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I am NOT a fan of probiotics for exactly the reason you just described but didn't connect, yet- you just started them, and you just regressed to feeling dizzy/fatigued and the pain is back.

It's like my early reactions to what was SUPPOSED to be gluten free, very low lactose yogurt - I kept reacting to it and reacting to it, and finally ditched it for a long time because every single time I ate it with added dry milk powders, flavorings, ect, I reacted. I concluded that it was either cross contaminated and just not gluten free inspite of the label, or it was having so many thickeners added at the wrong time that it was full of lactose and the yogurting fermentation process was not changing it.

Since then I have learned that with continued healing sometimes people regain the ability to digest it, I did. But that doesn't fix the cross contamination problem with a lot of brands.

Remember everything you put into your mouth needs to be gluten free, on a gluten free diet. Supplements, vitamins, etc. Do not always trust the labeling, because we currently do not have standards in the US as to what constitutes a food or drug as actually being gluten free. I also have seen several common store brands with very "iffy" labeling on their ingredients re using oils such as soybean or wheat for the vitamin E in their gelatin liquid capsules. The calcium supplement I was taking switched to adding an unnamed grain byproduct to it recently, which I find infuriating.

Gluten free crackers - I have had some real doozies of reactions to certain brands of those things that were "supposed" to be gluten free, so I stick to plain rice crackers now or rice cakes or corn chips I make out of a brand of tortilla I'm okay with. I am on the high end of the category of "can eat most" gluten free foods, so they must have been really messed up, and since they were rice based, it had to be something in the seasonings.

Also, you have noticed that you may have things in your cosmetics that have gluten, which is good (controversial for some, but if you have long hair you've just put oily gluteny conditioner all over, and are also slathering yourself with gluteny lotions and then doing food prep with your bare hands, it is going to spread. My spouse got me several times with this, until I made him change soaps/lotions. You could have a family member doing the same thing.... :unsure: ) Lip gloss, etc can also have soy as well as gluten. Also things like wooden cutting boards, toasters, old scratched teflon coatings can all be a source of hidden gluten.

So yes, ironing out the bugs over a period of time, is typical.

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Thank you for your reply.

The symptoms I described (dizziness, neck/shoulder pain, insomnia, extreme itching and DH flareup) are once again gone but I have continued the probiotics. I actually think it may have been a gluten free cereal and pasta that had other (non-gluten) grains including corn and quinoia. I avoided grains yesterday (except for brown rice) and feel good again today so I wonder if the corn/quinoia cause the same symptoms I experience from gluten. It's such a journey figuring all of this out! I am going to try the non-grain route for a while and see what happens.

Thanks again for you reply and best wishes for good health to you!

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Have you changed out your strainer for pasta? If you used the same one you used to use for gluten pasta that would gluten you. You also should get rid of any scratched nonstick pans and wooden utensils that have been used for gluten foods.

Early on in the diet many will have ups and downs and also go through withdrawl. It can take a bit of time to feel consistently better.

Do check everything that goes into or onto your body and go with as much whole unprocessed food as you can.

Please note that if you are going to get tested by your doctor in addition to the Enterolab tests you need to go back on gluten right away. If you gluten free your doctors tests will come back negative even if you are celiac.

I hope your feeling better soon.

Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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