Leg Pain And Second Introduction

[JRock]

Hi All,

I'm Jen - I joined the forum last week (I think), but due to some website problems, all of my posts and my profile were deleted.

So, to introduce myself again - I'm a 27-year-old gal married to a USAF guy, was diagnosed with Celiac disease in the middle of October with an intestinal biopsy followed up with blood tests. I still don't really understand my blood tests - my iron is low and I'm over 100 on the part that determines if you have Celiac. I got my blood tested two weeks ago (was having a lot of abdominal pain) and my doctor called saying that 10+ of whatever these things are is considered Celiac, and again, I'm 100+. I've been gluten-free since the day after I was diagnosed.

I've removed any medications that are suspicious of containing gluten, my husband has gone gluten free because he doesn't want to risk CC, I'm weeding out any skin/hair care products with gluten in them, I already threw away all of my gluten-containing chapsticks/lipsticks. I've educated myself on Celiac disease and have been doing everything I should be doing.

Yet I'm still having problems - I know it takes time to heal, but I'm getting extremely frustrated. Two weeks ago I was having so much abdominal pain I finally had to ask my doctor for some pain pills (which he reluctantly gave me) - I'm still having that pain occasionally, but two nights ago I woke up with leg pain that felt like it was in the bone! I could hardly walk on it when I got up for work, and now it has migrated up to my back. Granted, at my job I sit most of the time, but I've kept up my physical fitness (I don't do anything too difficult - usually I just run and walk).

Yesterday I bought some B-12 supplements, magnesium supplements, and ordered calcium (my mom swears by this particular brand) online, so I'm hoping to see some improvement. I would say an accidental glutening is possible, but 99% of the time I make my own food from scratch and double-check that it's gluten-free. I'm doing everything right, so why do I feel so terrible?

Thankfully, the forgetfulness and brain fog are starting to wear off a bit - that was not a fun part of going gluten-free.

Thanks for taking the time to listen to me babble and whine

Jen

[ang1e0251]

You are allowed to babble and whine here any time. You know it can take sometime to heal and you may have other weird symptoms before it's over. It just takes time and sometimes you may find other foods you are sensitive to on the way, dairy being a big problem for many. Maybe keeping a food/symptom diary for awhile will help you.

Keep at it and I know you'll feel better soon!

[RiceGuy]

As you know, it can take time to heal. But I suspect there are some thing you can do to help your body further.

I'm glad you got the B12 and magnesium. That is exactly what I'd recommend. However, the best form of B12 is methylcobalamin. Most have cyanocobalamin, which actually uses cyanide as the co-enzyme. Also, a sublingual is best for absorption, so that would also be my recommendation. According to the research I've done, at least 3mg per day is a good amount to take, but since there is no known level of overdose for B12, you can take all you want. It can also help to split the dosage throughout the day, rather than all at once.

If you can ask your doctor to give you a B12 shot, you should know fairly quickly whether the supplement is going to help.

Other B vitamins may help, so you might want to look into a strong B-complex too.

Many find that going gluten-free is not enough at first. Dairy is perhaps the most common no-no besides gluten, though you may be able to add it back in once your body heals. One thing I know gave me a lot of leg/back pain was nightshades, so I'd suggest avoiding those too.

If after these things you still have the same symptoms, then I'd suspect some of the other common allergens, such as soy, corn, nuts, yeast, etc.

As for CC, have you tossed out wooden spoons, scratch non-stick pans, cast iron pans, wooden cutting boards, etc? You will also need a new toaster/toaster oven, if you use those, as gluten can't be reliably removed from these either. Also, check dish soaps, and you may need to get a new dish sponge or whatever you use for washing dishes.

I hope you start to feel better soon!

[sbj]

Did you undergo all of the other tests that someone who is newly diagnosed with celiac should have? CBC, nutritional levels, mineral deficiencies, bone density, discussion of symptoms of other auto-immune disorders? Or did your doc simply tell you that you had celiac, tell you to go on the diet, and then shoo you out the door? Some do that - and they shouldn't.

As far as the abdominal pain, leg pain, etc., -- just because you have celiac it doesn't mean that celiac is causing all of these problems. Abdominal pain could be a sign of urinary infection, appendicitis - all kinds of stuff not even related to the intestines. Sitting all day at a computer can cause back pain even with a good exercise program. You might want to request a referral to a physical therapist. Aching joints might be arthritis. You might want to visit a different doctor - s/he should be willing to work with you until you have relief of symptoms.

[mef]

Hi Jen--

I had to reply because your presentation is somewhat similar to the celiac experience I have had:

I was diagnosed a year ago with Celiac after mysterious leg pain and numbness took over my life. For years doctors thought I had shin splints, but the pain skyrocketed about three years ago--I could barely crawl out of bed! Along with my Celiac Sprue test, my iron level was low (chronic ice chewer here!) and my Vitamin D was very low. Vitamin D deficiency has been known to cause leg pain (espcially the pain you described). While I was going gluten-free, I still had leg pain, but as my Vitamin D level increased, I think the pain has gone down. Then again, I am sure you will learn that in the beginning stages, as one thing calms down, another might flare up.

As to the abdominal pain--I have heard that high dose iron supplements can cause some stomach pain. Additionally, my rheumatologist theorized that swelling in the intenstinal track can lead to edema in the stomach and legs (swelling can equal pain!). I hope everything works out for you. Be aggressive in receiving the medical care you need. It is very easy to fall through the cracks when you don't have a dedicated doctor.

Good luck!

[ladywinger]

Hi Jen, I just wanted to reiterate what you already know...yes it will take time to heal.

I too have a Vit. D deficiency---I had it checked in May of this year....very very low.

My internist put me on mega dose of Vit D....I had it checked again last month and it

has come up to just below the normal range....so she has me continuing the dose

for another six months. Main thing with taking Vit D is that you need to be monitored

by your doctor...you can become toxic. I am not experiencing the leg pain as much anymore.

I had my B's checked out...I am ok there.

My gastro doctor told me to take probiotic every day also. (get a good one- I use Flora Q)

This to has helped me a bunch.

I know that my celiac is now under control....I just have to remain diligent in reading

labels and asking questions when eating out.

Hang in there...!!

P.S. I would like to "Thank your husband for his service!"

[JRock]

Hi again,

Thank you for your posts, I definitely need all the help I can get. I

[sbj]

Hi Jen: Let me also thank your husband (and you by extension) for his service to our country. I appreciate it - and I support the cause.

Insurance can be a problem but I hope that your doctor/insurer is at least willing to give you the bone density scan. I only found out I had osteopenia by this easy test and now I take both calcium and vitamin D daily so please ask for it. I think it might be a good idea to search on the internet for all of the tests normally recommended for newly diagnosed celiacs. Print it out and put it in front of your doctor's face. They are much less likely to refuse a test if you are an informed patient - they might also fear that failing to order necessary tests might be considered malpractice. Just to cover yourself, you can always send a letter to your insurer outlining your requests just so you have something on record. Many celiacs also suffer from other auto-immune disorders so it's a good idea to discuss these other disorders with your doctor to see if you recognize any symptoms.

Hope you begin to feel better shortly!