My daughter suspects Celiac

Leah · Post by **Leah** » Thu Jun 07, 2012 6:03 pm

Hi All. My 22 year old daughter just called me and asked me if I have heard of Celiac disease ( ha ha). She has always been prone to head aches and slight stomach issues. Now she can longer tolerate alcohol. In the past two months, she has broken out in weird hives ( eating nothing unusual) and she just told me that sometimes her hands and feet tingle.

I told her to go get a blood test, but suspect it will come up negative. I warned her that would happen and that she should try to go gluten free for a month and see if the head aches go away. She's freaking out right now. She was always my bread, pasta and cheese girl.

Besides the blood test, is there any other test that can be done?

Leah

Post by **tex** » Thu Jun 07, 2012 6:24 pm

Leah, if she has paresthesia, she's probably very low on vitamin B-12. That needs to be corrected immediately, because it can cause permanent neurological damage. She may have pernicious anemia. That should be tested. If she has it, she will need either sublingual B-12 lozenges, or injections (together with the appropriate dose of folic acid).

Tex

Leah · Post by **Leah** » Thu Jun 07, 2012 6:35 pm

Thanks Tex. I just e-mailed her that info. She's young and tends not to get things done quickly, but I'm trying to scare her into it :) . She's up In Sonoma County ( college) - which is about 80 miles from here. She has to be a big girl and take care of this one.

Leah

LindyLou · Post by **LindyLou** » Thu Jun 07, 2012 7:42 pm

Leah,
My new GI doctor told me she also suspects celiac in me and has ordered a promethus blood test and I believe it is called an EGD. She suspecting I do not produce the antibodies necessary to get an accurate reading on a blood test so I think the biopsies of the small intestines might tell her what she needs to know. I too am displaying the symptoms she is. I am also waiting for the results of the Enterolab test. After a full year gluten free I still am having some serious issues that I just can't shake now including tingling in my fingers and patches of my legs. Hoping she seeks the care she needs. I know how hard it is to have a daughter who is Ill and lives a distance away. My daughter lived in Florida and developed a rectal abscess that she delayed in getting treated. Once the did surgery on her, they determined she has Chrons disease. I actually believe she also has mc too. Now that she is back home with us, she is following a strict diet and is extremely careful abut what she puts in her body. She also is taking the promethus test and hopefully between the two of us we can get our health back on track. Sending my best wishes to you and your daughter.

Linda

Leah · Post by **Leah** » Thu Jun 07, 2012 8:48 pm

Thank you Linda. She is waiting to hear from the doctor about the blood tests. I hope they take her seriously and do all the test needed.

jmayk8 · Post by **jmayk8** » Fri Jun 08, 2012 4:41 am

Best of luck to her, I hope she has a good doc!
Jenny

amberlink09 · Post by **amberlink09** » Fri Jun 29, 2012 6:12 pm

Hey Leah,

I'm reading through old posts and wondering if your daughter ever found anything out? She should really get the B12 testing done. I went to 3 different doctors telling them that my leg was numb and my feet/hands/arms/even head had started tingling and they kept telling me I probably pinched a nerve or something before someone finally tested my B12. I was pretty surprised to find out I was low on it because my diet is mostly protein based and I take supplements, after about 2 weeks of injections though I finally started improving. Even now if I miss an injection my symptoms return.

Kari · Post by **Kari** » Fri Jun 29, 2012 6:48 pm

Amber,

I've also tested low on B12 (2 years in a row), but cannot find any over the counter product that I tolerate (have tried many). I've been thinking about getting injections, so I'm wondering if you go to your dr. to have this done, or if you do it yourself??? Also, do you notice a difference in your energy level with the injections?

Thanks,
Kari

amberlink09 · Post by **amberlink09** » Fri Jun 29, 2012 6:55 pm

Hey Kari,

I was going to the doctor to get them, but between working full time and going to school at night going in twice a week became a pain so I started giving them to myself this week. Well, I tried to give them to myself and chickened out so I had my boyfriend do it instead. I am definitely feeling more energy, before I was sleeping up to 10-12 hours a night and just dragging all day long, I didn't know what was wrong with me. With the injections my energy levels are definitely better, all of my symptoms haven't completely resolved yet but hopefully they will soon.

maestraz · Post by **maestraz** » Fri Jun 29, 2012 7:39 pm

Hello folks,
I have been getting B-12 injections, first weekly for a month, now monthly, since last fall, due to a pretty severe deficiency. I'm not going to say that I feel like a bundle of energy after I get the shots, nor have my levels skyrocketed, though they're better. But I was having some very troublesome neurological symptoms last fall that were freaking me out, given that my mother (who had B-12 deficiency requiring shots as a younger woman) had just died after 12 years of dementia. I do feel better now, but other modifications happened beyond the B-12 shots that I feel also helped. My daughter, when she was in grad school, and mostly vegetarian, had also developed a severe B-12 deficiency requiring injections (which she said at the time made a huge difference). Her doc ordered her to eat "food that comes from things with eyes."

jmayk8 · Post by **jmayk8** » Fri Jun 29, 2012 7:41 pm

About an hour or so after my first B12 injection, the whole left side of my body was numb and tingling (the side I had the injection). Even half of my face felt numb...It lasted for about 24 hours and I never went back to get another. It was so scary!
Jenny

amberlink09 · Post by **amberlink09** » Fri Jun 29, 2012 9:19 pm

If your daughter doesn't get any relief with giving up gluten, she might want to look into Salicylate intolerance. My roommate had this and it slowly got worse- she gets hives and a really upset stomach with aspirin, certain foods, and certain alcohols and mixers. I just thought of it since you said she couldn't tolerate alcohol anymore and that's what happened to my roommate.

MBombardier · Post by **MBombardier** » Sat Jun 30, 2012 8:44 am

Leah, you don't look old enough to have a 22yo daughter.

Kari, have you ever tried ZipFizz? http://www.zipfizz.com It's a powder that you mix with water. I have a couple of these every day. You can go to the site and see what's in them. I like them because they have a lot of vitamins and minerals, including 2500mcg (41667% RDA) of B-12. They have 3g of carb with no artificial anything. They have 100g of caffeine from guarana seeds and green tea. I've been drinking them since Costco started carrying them in 2004. They taste really good--the orange is sort of like Tang.

I do have to warn you, though, the first one or two you drink will give you a serious buzz, probably from the B-12. I didn't think they did anymore, than Lauren, my oldest, had one a few weeks ago and commented on it.

Leah · Post by **Leah** » Sat Jun 30, 2012 4:31 pm

Hi Amber. Thanks for asking about my daughter. She did get her B-12 level tested and it is fine. It's interesting about the salicylate. I didn't know you could be tested for it...or can you? What else besides asprin and alcohol has it in them? Thanks for the suggestion!

Deb · Post by **Deb** » Sat Jun 30, 2012 4:36 pm

I guess I'm confused. Can we get enough B12 from a pill/drink? I thought it had to be sublingual or shots.