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Old 07-19-2010, 09:44 AM   #21
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Re: Gluten Free Mamas, UNITE!

Not trying to hijack this thread, but since you all are very knowledgeable about gluten, can I ask some questions????

Here's my story, tell me what you think:

I began with some "shocking" type feelings in my back. This was something I thought were due to my hardware (inserted due to scioliosis in 2001). It was off and on and I would get periodic cortisone shots and it would disappear for a while. No biggie, just annoying.

Fast forward to 2008, and before I was pregnant with my twins, I was having non-specific stomach issues (alternating diarrhea/constipation and pain). I soon found out I was pregnant, so thought it might just have been due to that.

Of course, my pregnancy was painful and difficult...again, I dismissed it to having twins. I developed pre-eclampsia, PUPPS and was on bedrest for the last several months.

Following the birth of my boys, I have some heavy, pulsing sensations in my hands and feet. I also had severe back/neck pain and a very tight, aching in my neck/shoulders. And, again, the "shocking" sensation returned. I asked my OB if it might be from the pre-eclampsia and she said no. I also began losing weight VERY quickly. I had been 215 lbs. when I became pregnant, gained 70 pounds during my pregnancy, and within 7 months of my boys being born, I had lost all of my baby weight, plus an additional 75 pounds (I currently weight 140 lbs.). I went to my family doctor and had my thyroid checked, etc. and he said it was just "stress" and maybe fibromyalgia. While, I agree, I am under stress, my body has never reacted this way to stress and it just didn't seem like that could be all that was going on.

So, I went back to my spinal doctor (who had put in the hardware in 2001) and he ran some tests and thought I might have spinal cord interference. He removed the hardware in April and I continued to have the shocking sensations in my back, and then they also began in my hips. He referred me to a rheumotologist who ran blood tests for auto-immune diseases like lupus, MS, rheumatoid arthritis, etc...just heard from him today and all were negative. He suggested I get my hormone levels checked by my OB.

Some other symptoms: very dry skin on my fingers/knuckles that cracks and bleeds; alternating diarrhea/constipation; headaches (dull and achy); tight, tense, painful neck; shocking sensations in various points of back/hips; sores in my mouth (tongue mostly); foggy headed; forgetful; "pulsing" in my stomach (typically after eating); numbness/tingling in hands and feet; severe sensitivity to hot and cold in my hands/feet; unexplained weightloss; generalized pain/achiness (especially in back and joints)

Again, so sorry to hijack this thread and for this being a novel ...but does any of this sound like celiac or gluten intolerance??? My BIL is celiac and I just know that something else is going on with me and am willing to try just about anything I can to figure it out! I know the range of symptoms in celiacs can vary significantly...but what do you mamas think?

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Old 07-19-2010, 09:45 AM   #22
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Re: Gluten Free Mamas, UNITE!

Double post

Last edited by mama2twins; 07-19-2010 at 10:02 AM. Reason: Double Post
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Old 07-19-2010, 09:56 AM   #23
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Re: Gluten Free Mamas, UNITE!

Sorry for the double post...but some other symptoms I forgot to add:
extreme fatigue; trouble sleeping (falling asleep and achieving a deep sleep); slow healing sores
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Old 07-19-2010, 10:06 AM   #24
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Re: Gluten Free Mamas, UNITE!

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Sorry for the double post...but some other symptoms I forgot to add:
extreme fatigue; trouble sleeping (falling asleep and achieving a deep sleep); slow healing sores
All of those symptoms could be related to celiac. Gluten is inflammatory, so it can cause all kinds of arthritis-like symptoms, and I had the exact same feelings in my hands, and the same kind of issues with my back and neck. I would definitely recommend checking into it.
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Old 07-19-2010, 10:12 AM   #25
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Re: Gluten Free Mamas, UNITE!

Should I try to find out about getting a "diagnosis" and, if so, how do I go about that? Or would you just recommend that I try a gluten-free diet on my own? If I just dive in, how long does it usually take before you notice if "it's working"? Any recommendation on where/how to start???

I am so SICK of feeling SICK! I don't know why, but I just have a feeling that this is what it is, especially when I read that it can be "brought on" by stress and pregnancy (when otherwise "dormant"). When I read your story, a lot of what you described sounds so familiar! Thank you for replying!
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Old 07-19-2010, 10:53 AM   #26
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Re: Gluten Free Mamas, UNITE!

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Originally Posted by mama2twins View Post
Should I try to find out about getting a "diagnosis" and, if so, how do I go about that? Or would you just recommend that I try a gluten-free diet on my own? If I just dive in, how long does it usually take before you notice if "it's working"? Any recommendation on where/how to start???

I am so SICK of feeling SICK! I don't know why, but I just have a feeling that this is what it is, especially when I read that it can be "brought on" by stress and pregnancy (when otherwise "dormant"). When I read your story, a lot of what you described sounds so familiar! Thank you for replying!
Well, I'm personally a little skeptical of the diagnosis process, but probably the best way to go is to look into a diagnosis, and if it doesn't come back positive, try going GF for a while and see if it helps.

Diagnosis is usually done first by taking a blood screening, which can be terribly unreliable. Then they do an upper esophageal endoscopy (a gastroenterologist takes a sample of the esophagus to look for damaged villi). That's supposed to be done twice, but they can still miss a damaged portion even then.

Most people notice a difference within a few weeks of going GF, and a huge turn around after about 3 months. (It takes about 3 months for the villi to completely grow back). Most people do well at first avoiding dairy as well, since the enzyme that digests lactose is formed at the tip of the villi, and is the first thing to go when the villi are damaged (that's why there's such a link between gluten intolerance and lactose intolerance).
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Old 07-19-2010, 12:16 PM   #27
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Re: Gluten Free Mamas, UNITE!

Getting diagnosed is a pain, but if you have a good dr and good insurance I'd say try. Going gf is a good way to find out if it clears up your symptoms, but if you ever want to know for sure for any reason, you'd have to go back on gluten for a while to get a diagnosis. I think it's nice to have a proper dx, mainly because my 3 year old is gluten intolerant but never been diagnosed, and my husband is skeptical and keeps pressing for a real diagnosis but I really don't want to put her back on gluten for a couple months to find out... Doing allergy testing is nice anyway as you may find out other things your allergic to, besides gluten. It's very genetically linked so if your gluten intolerant your children stand a good chance of being intolerant also.

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Originally Posted by mama2twins View Post
Should I try to find out about getting a "diagnosis" and, if so, how do I go about that? Or would you just recommend that I try a gluten-free diet on my own? If I just dive in, how long does it usually take before you notice if "it's working"? Any recommendation on where/how to start???

I am so SICK of feeling SICK! I don't know why, but I just have a feeling that this is what it is, especially when I read that it can be "brought on" by stress and pregnancy (when otherwise "dormant"). When I read your story, a lot of what you described sounds so familiar! Thank you for replying!
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Old 07-19-2010, 02:21 PM   #28
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Re: Gluten Free Mamas, UNITE!

Thanks for the info! I want to start a GF diet like NOW, but also don't want to make it impossible to get a proper diagnosis...it's just so frustrating going through all the red tape with referrals, tests, appointments, etc. Ugh...I wish there was a home test I could just order and do, then, go from there!
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Old 07-19-2010, 02:30 PM   #29
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Re: Gluten Free Mamas, UNITE!

mama2twins,
I just wanted to add as far as getting a diagnosis, traditional allergy testing may or may not show if you have a sensitivity to gluten. There are a lot of different kinds of reactions your body can have to foods and it may not mean you are "allergic" in the typical sense of the word but you know your body and know that there is something going on. I honestly think the best way to know is just to try cutting out the possible culprits. If it helps, great! If not then maybe you will want to try and figure out what else could be going on by getting tests. If you are able to manage it I don't know that the actual diagnosis would be as important. We do not have one for my son but I notice a difference in his digestive symptoms. But as a pp said, if it will make you feel more certain and comfortable with going on and staying on the diet, go for it and get tested. That is totally understandable, it's whatever you prefer. Good luck, hope you feel better!

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Old 07-19-2010, 02:30 PM   #30
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Re: Gluten Free Mamas, UNITE!

ps. It is so strange to me how most doctors consider nutritional issues LAST after ruling everything else out, when it can be tied to so many health problems that people experience...

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