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Looking For Some Advice Please

Slr38

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Slr38 Apprentice
Slr38
Posted

Hello,

For about 20 years now I have been dealing with a vast array of symptoms. Some of them include tingling and numbness in my hand and foot (one side only), extreme fatigue, painful joints and muscles, terrible night sweats, alopecia, brain fog, Raynaud's.

In my early 20's I had an MRI to check for MS and it was ruled out. In the last year my symptoms have intensified. Last week I saw a neurologist again who once again ruled out MS. I also had blood work which also ruled out Lupus and Rheumatoid arthritis.

I have been reading about Celiac disease and am wondering if it would be worth looking into. I occasionally have bloating and cramping but nothing major. I did read that some people with Celiac Disease have no stomach problems at all.

I know that some of these symptoms can be from B12 or D deficiencies. My Vitamin D is just barely deficient (79.8 Ref Range 80 -200) and my B12 was normal (285 pmol/L Ref Range 155 -700). Are these symptoms only attributed to Vitamin deficiencies with Celiac Disease? I hope I am making sense here! Please let me know if my question is not clear!

Thanks for your help. I am getting so frustrated not knowing why I am feeling this way.

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GFinDC Veteran
GFinDC
Posted

HI,

Medical science hasn't figured out what causes all the symptoms of celiac disease. There are about 300 of them possible and they are all over the body. Nuitirtional deficienices are certainly one of the causes, auto-immune damage is another. Leaky gut issues can also cause symptoms. Thyroid issues are somewhat common also and vascular issues. Hair loss happens too but exactly why is a question. Brain fog and memory issues can also happen along with nuerological damage. People with celiac sometimes develop additional food intolerances beyond gluten. Nightshades are one that is associated with joint pain. The symptoms that each individual develops vary widely.

If you want to pursue testing, and I think you should, stay on gluten until testing is completed.

Kansas Rookie
Kansas
Posted

I am gluten intolerant, my first symptoms were nerve related. Went to doctors, specialists, they ruled out everything, but couldn't tell me what was causing my problems. I went gluten free on the advice of a neighbor, and the nerve problems dissappeared along with about 300 other symptoms...well maybe not 300 but close. Took awhile but am feeling great now with no symptoms. If you want a definite diagnosis, remain on gluten to be tested. I had an endiscope, and gene testing, negative results, was too sick to go back on gluten for blood test. I stay away from resturants and other people's cooking and cook mostly with whole foods and I stay healthy!

frieze Community Regular
frieze
Posted

Hello,

For about 20 years now I have been dealing with a vast array of symptoms. Some of them include tingling and numbness in my hand and foot (one side only), extreme fatigue, painful joints and muscles, terrible night sweats, alopecia, brain fog, Raynaud's.

In my early 20's I had an MRI to check for MS and it was ruled out. In the last year my symptoms have intensified. Last week I saw a neurologist again who once again ruled out MS. I also had blood work which also ruled out Lupus and Rheumatoid arthritis.

I have been reading about Celiac disease and am wondering if it would be worth looking into. I occasionally have bloating and cramping but nothing major. I did read that some people with Celiac Disease have no stomach problems at all.

I know that some of these symptoms can be from B12 or D deficiencies. My Vitamin D is just barely deficient (79.8 Ref Range 80 -200) and my B12 was normal (285 pmol/L Ref Range 155 -700). Are these symptoms only attributed to Vitamin deficiencies with Celiac Disease? I hope I am making sense here! Please let me know if my question is not clear!

Thanks for your help. I am getting so frustrated not knowing why I am feeling this way.

those vitamin levels are not particularly good, if symptomatic, B12 should be over 500. I am not familiar with that method of measuring D, but i am thinking you would want to be nearer the middle....

Newbee Contributor
Newbee
Posted

I've been reading a book about B12 and checked the number you mentioned and according to this book they say that score actually falls in the "gray zone" which they say is anything between 200 - 450. In the book they suggest the "normal" threshold should be raise to at least 450 as deficiencies can begin to appear in the cerebral spinal fluid below 550. So sounds like B12 treatment should help you. I'd recommend you get this book if you can so you can get more info: http://www.(Company Name Removed - They Spammed This Forum and are Banned)/Could-It-Be-B12-Misdiagnoses/dp/1884995691/ref=sr_1_1?ie=UTF8&qid=1349493997&sr=8-1&keywords=could+it+be+b12

Also, as celiac disease can cause B12 deficiency, it might be worth getting tested for this as well. Good luck!

Newbee Contributor
Newbee
Posted

I see the forum didn't like my link, so I'll spell out the info. The book is called Could it be B12: An Epidemic of Misdiagnoses by Sally M. Pacholok and Jeffrey J. Stuart.

Slr38 Apprentice
Slr38
Posted
  • Author

Thank you all for your replies. Your answers have been very helpful.

Newbie: I happen to have that book on my desk! I borrowed it from the library a few days ago but have not had time to read it yet. One thing to note is my B12 level is in different units than in the book. I figured out the conversion which puts my B12 at around 350 I think. Higher but still in the "gray zone" I guess.

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Newbee Contributor
Newbee
Posted

I also was able to get my copy of the book from the library. :) Thanks for pointing out the different units, I obviously didn't catch that. Your score still seems pretty low based on the info I read in the book. I hope B12 supplementation helps you. I actually just went in yesterday to get my B12 tested. I asked for all the tests they recommended in the book. I'm curious to see how it turns out. The doc didn't even seem to know what those other tests were and I had to go to a different lab for 1 of them because it wasn't something there lab would do. They forwarned me my insurance may not cover some of them. Good times.

Slr38 Apprentice
Slr38
Posted
  • Author

I decided to take a look at my other blood test results after a few of you mentioned my vitamin levels were not great (even though the dr. said they were fine).

I noticed my ferritin is at 54 (Ref range 13 -375) which is down from 95 in April of 2011. I asked the dr. about this when she showed me my results last week. She said it was fine since you have to look at other levels together.

Any insight? Would you think this level is low? Could there be a celiac disease connection? I was not tested for celiac disease but are there anything else I should look for on my tests?

Thanks again.

frieze Community Regular
frieze
Posted

I decided to take a look at my other blood test results after a few of you mentioned my vitamin levels were not great (even though the dr. said they were fine).

I noticed my ferritin is at 54 (Ref range 13 -375) which is down from 95 in April of 2011. I asked the dr. about this when she showed me my results last week. She said it was fine since you have to look at other levels together.

Any insight? Would you think this level is low? Could there be a celiac disease connection? I was not tested for celiac disease but are there anything else I should look for on my tests?

Thanks again.

Yeah, that drop wouldn't make me happy either!

celiac testing ASAP. then diet, supplements.

Newbee Contributor
Newbee
Posted

I don't know about the level, but celiac disease can cause anemia and low ferritin levels. It is difficult to tell if you have celiac disease until you get tested. I really didn't think I had the disease but some things aligned with stuff I'd heard about celiac. Once I got fully tested I found out I was at the end stages of the disease. I've heard others say this about not really thinking they have it but wanting to rule it out. As it sounds like you have some signs of this disease, I would recommend you go ahead and have the celiac blood test(s). I don't think the blood tests are very expensive and my insurance actually paid of mine. It is better to know for sure, and the sooner you find out the better as healing can be much more difficult if the disease has progressed and you have a lot of damage.

Slr38 Apprentice
Slr38
Posted
  • Author

Thanks again for everyone's input.

I noticed on our standard blood requisition forms here (Alberta, Canada) there is a box for the doctor to tick off called simply Celiac Disease. If it is on the form then it is "free" I guess. The problem will be getting back to the doctor and for her to agree to send me for yet another blood test.

I ordered the home test kit to see what that says first. Has anyone else tried it? I figure if it happens to be positive I can bring it along for ammunition.

My doctor gave me an Rx for penicillin to treat Lyme Disease (without bloodwork!). I am holding off on filling that prescription!

shadowicewolf Proficient
shadowicewolf
Posted

I didn't have vitamin diffenencys (we're all different!) but i had major gastreo issues (vomiting and "D"). postive IGA TTG and genetic testing, negative biopsy.

nvsmom Community Regular
nvsmom
Posted

HI :) I did the home biocard test and had a very faint positive (it tests ttg IgA); I didn't get the full amount of blood squeezed out to fill that mini-vial so that could have affected my results. Anyway, I brought my positive test to the doctor too, and he ordered the celiac panel for me. At CLS (Calgary) the panel consists of EMA, ttg IgA, and total IgA levels, all free. :) My EMA titre was 1:40 and ttg IgA was over their upper limit of 200 (ref range 0-20) so my GP declared me celiac; he said I could do the endoscopy if I wished, and I didn't.

I don't have any vitamin deficiencies either, except for my vit D which was just above yours.

And that's good to hear your lupus and MS tests were negative. I hope you find answers soon. Good luck.

Slr38 Apprentice
Slr38
Posted
  • Author

Hi Nicole,

Nice to "see" you! I have ordered the Biocard from London Drugs in Brentwood because nobody seems to have it in stock in Calgary. I think I have been tested for everything except celiac disease. I am so frustrated and tired of feeling so sick all the time without any answers. We"ll see what happens...

Happy Thanksgiving!

Nice day for Heritage Park :)

nvsmom Community Regular
nvsmom
Posted

If your tests end up being negative, remember that celiac blood tests have a false positive rate around 25%. After all your testing is done, even if it is a negative result, you might want to give the diet a go for a few months to see if it has any effect on your health. The NW has many stores that sell gluten-free foods so it's not that hard to do; you just need to be aware of small amounts of gluten in vitamins and sauces (like soy or worchestershire) that can get you.

Those with non-celiac gluten intolerance have the same symptoms as celiacs, just not the damage to the small intestine. As you know, celiac (and non-celiac GI) can present in hundreds of ways, so it could be the cause of your poor health. Personally, after being gluten-free for over three months, I noticed a huge reduction in my GI symptoms and migraines, I didn't realize how often I had stomachaches and headaches until they were gone. Also my hair started growing in again so I have small patches of hair 2" long sticking out the top of my head; I like thicker hair but it looks a bit silly when the wind messes it up. LOL Unfortunately something else is causing it to thin again... two steps forward and 1 step back, eh? lol

The celiac society of Calgary is really helpful too. They have a meeting once a month for newbies and can provide a ton of info for starting out gluten-free.

Happy turkey day. :) And let us know how your search for answers goes. :)

Slr38 Apprentice
Slr38
Posted
  • Author

Hi Nicole,

Thank you for the great info. IF ever I am diagnosed with celiac disease I will have to ask you about the the stores in the NW. Good to know there are some around. The meetings also sound very useful.

Thanks again.

Stephanie

Slr38 Apprentice
Slr38
Posted
  • Author

Also my hair started growing in again so I have small patches of hair 2" long sticking out the top of my head; I like thicker hair but it looks a bit silly when the wind messes it up. LOL Unfortunately something else is causing it to thin again... two steps forward and 1 step back, eh? lol

:)

I have these 2" hairs that stick up too as my hair falls out and regrows! Very annoying buy yes, at least it grows back :)

GFinDC Veteran
GFinDC
Posted

If your tests end up being negative, remember that celiac blood tests have a false positive rate around 25%. ...

Oops, I think there was a little brain flatulence there. :D The blood tests are almost always right when they are positive for celiac disease. But some of them do have a false negative rate that is an issue. The tests may show you as not having celiac disease, (false negative) but you actually do have it.

Slr38 Apprentice
Slr38
Posted
  • Author

Oops, I think there was a little brain flatulence there. :D The blood tests are almost always right when they are positive for celiac disease. But some of them do have a false negative rate that is an issue. The tests may show you as not having celiac disease, (false negative) but you actually do have it.

Thanks for clearing that up!

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    • Jane02
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      Contact them.
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