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ohsroac

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ohsroac Apprentice

I previously made a post about my daughter being tested, the waiting is killing me. I have spent a lot of money going to doctors for years because of my many symptoms and I am at the point where I am tired of going. I know I should get tested for Celiac but I don't want to, I thought well if I go on the diet and I feel better why get tested and pay thousands of dollars for them to tell me to go on a diet?

I had a hysterectomy 3 years ago and the surgeon messed up and I almost died. He punctured my bowels three different places and recovering from that was stressful. I am 33 years old now and feel like I am 60ish at times.

The doctor thinks I have IBS, but I don't agree with him. My BM's are different each time, I can function at work without having to go to the restroom ( I have a fear of having BM's in public). I can have 4 BM's in a day and then feel constipated afterwards. My stomach feels great in the morning, but after I eat I get bloated. I stay that way all day! I drink water, and limit soda to 1 or 2 a week. I don't salt my foods! At night after I have a BM I am in pain the rest of the night. I get zero relief! My bones hurt my feet throb! OHHH my feet hurt so bad and I don't work on my feet much! I want to exercise and I try, but my energy is gone. I use it all up to clean and cook and take care of my kids. When I do exerice I am more tired than when I begain. I don't get, should'nt I have more energy?

2 years ago I started breaking out in hives. My skin gets red and now it has progressed to my face; mainly around my nose and lips and forhead. I went to a RA doctor because my SED rate was 46 and he tested me for RA but it was negative-thank you Jesus! then he thought I may have lupus.. He said, "well you have something but it is laying dormat and we can't find it" that is not help to me when I don't feel good!

My B-12 blood test was within normal range

My WBC was a little high but not majorly high

Whatever a neutreophil is, both results were a bit high but not by much...

I don't know. I am on day four of gluten free and I have not noticed a change yet, too soon maby?

Here are my main symptoms and you all help me understand please:

hives

IBS symptoms

joint aches and pains, but I can still function and get through it

back pain at times when I bend over I will get really sharps pains sometimes taking my breath away

I love my teeth, I take care of them, but I have horrible TOOTH DECAY I hate it

feet numb and tingling all day and restless legs at night! HORRIBLE

I have skin discoloration on my neck and the doctor thougth I had a thyroid problem or diabeties, but both test were negative!

So, what do ya'll think?

Thanks,

Lena


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Charlee22 Newbie

Wow, your BM problems sound just like mine- it differs from day to day- but there is something always going on in my tummy. I can feel it.- I almost feel worse after i go- or the same- but never better. im still in the process of being diagnosed- i had inclusive blood results

ohsroac Apprentice
Wow, your BM problems sound just like mine- it differs from day to day- but there is something always going on in my tummy. I can feel it.- I almost feel worse after i go- or the same- but never better. im still in the process of being diagnosed- i had inclusive blood results

I hate the unknown and I like this group because I can find others who understands and can relate to me! Thanks for your reply.

Lena

mimommy Contributor

Hi there. I can certainly relate to your plight, as I have similiar symptoms and no positive labs for any of the usual suspects. But, negative labs don't mean that there isn't anything wrong, only that your doctors haven't figured it out yet. My daughter has celiac, my mother has psoriatic arthritis and fibromiyalgia, my father has rheumatoid arthritis, my grandmother had heartburn that plagued her her entire life along w/ arthritis and tendinitis, and my grandfather and another grandmother both had diabetes. All of these are related, as all are auto-immune/inflammatory/genetic disorders. Not to be bore, but have a look at the links below. I think it is entirely possible your pain and GI issues are connected.

And, I feel your pain--literally.

Open Original Shared Link

Open Original Shared Link

BigDogz Explorer
My B-12 blood test was within normal range

My WBC was a little high but not majorly high

Whatever a neutreophil is, both results were a bit high but not by much...

I don't know. I am on day four of gluten free and I have not noticed a change yet, too soon maby?

Here are my main symptoms and you all help me understand please:

hives

IBS symptoms

joint aches and pains, but I can still function and get through it

back pain at times when I bend over I will get really sharps pains sometimes taking my breath away

I love my teeth, I take care of them, but I have horrible TOOTH DECAY I hate it

feet numb and tingling all day and restless legs at night! HORRIBLE

I have skin discoloration on my neck and the doctor thougth I had a thyroid problem or diabeties, but both test were negative!

So, what do ya'll think?

Thanks,

Lena

Do you happen to know what your B12 level was? US practitioners are just know coming around to the fact that or "low normal" levels are too low. Many people have symptoms such as the numb, tingly and restless feelings when B12 drops below 450. The National Institute of Health now recommends levels of 450-900 but most US doctors still go by the old-school values.

I've gone from having what my dentist classified as "fantastic teeth" to having dental enamel of "poor quality". From what I understand, this is common with Celiac Disease. I'm currently undiagnosed (officially), too, because my doctor has been unwilling to pursue testing. I'm going to do a home test kit that I'm getting shipped in from the UK but I'm confident in my own diagnosis since my symptoms disappeared during a month-long gluten-free trial and came right back, hot and heavy, when I went back to eating gluten again.

Thankfully, I don't get the hives that you do but my tongue gets kind of sore...almost as though I've burned it even if I haven't.

ohsroac Apprentice
Do you happen to know what your B12 level was? US practitioners are just know coming around to the fact that or "low normal" levels are too low. Many people have symptoms such as the numb, tingly and restless feelings when B12 drops below 450. The National Institute of Health now recommends levels of 450-900 but most US doctors still go by the old-school values.

I've gone from having what my dentist classified as "fantastic teeth" to having dental enamel of "poor quality". From what I understand, this is common with Celiac Disease. I'm currently undiagnosed (officially), too, because my doctor has been unwilling to pursue testing. I'm going to do a home test kit that I'm getting shipped in from the UK but I'm confident in my own diagnosis since my symptoms disappeared during a month-long gluten-free trial and came right back, hot and heavy, when I went back to eating gluten again.

Thankfully, I don't get the hives that you do but my tongue gets kind of sore...almost as though I've burned it even if I haven't.

Interesting about the B12. Mine was 266 and was based on a range of 236 to 1030? I am starting to feel better though!

BigDogz Explorer
Interesting about the B12. Mine was 266 and was based on a range of 236 to 1030? I am starting to feel better though!

My lab puts the lower limit at 180, which is one reason my doc didn't even want to treat me. The Europeans and Japanese go by much higher limits than we do in the US. They say that the ideal B12 level is 1,100-1,300. What's really interesting about that is that Alzheimer's is virtually unheard of in Japan and not nearly the problem in Europe as it is here in the US. Sure makes you think our levels are just way too low. Isn't it a shame to think that so many of our elderly are suffering from a horrible, memory-stealing disease just because our doctors aren't prescribing enough vitamins, of all things?!


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    • Scott Adams
      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
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    • Butch68
      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too.  is this everyone’s experience?  Can I drink it?  I get dermatitis herpetiformis and don’t get instant reactions to gluten so can’t try it to see for myself. 
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