GirlScout

Hi Ravenwoodglass,

Thanks for your concern over hidden gluten in my supplements. As my business deals with natural and holistic therapies, I am very well aware that there are no hidden glutens in my supplements. I do not buy my supplements from vitamin stores. Both my MIL and I are in the health and wellness industry and deal directly with the naturalceutical companies that provide us our supplements. Also my diet consist of whole foods. I bake my own breads (I don't eat a lot of bread or crackers etc) with gluten free ingredients & uncompromised baking dishes. I actually follow the Eat-Clean diet (gluten-free) by Tosca Reno. I haven't had problems with Celiac disease so much as lately with the Peripheral Neuropathy, which can relapse due to in my case, the bad fall on ice I had. They also found herniated disks in my C-spine, and I'm sure they'll find the same in my back when that MRI comes around in Nov. But Peripheral Neuropathy and Celiac go hand in hand, as do many other conditions, as we are becoming more and more aware of.

Thanks again, and wishing you well,

Amanda

Hi sreece68,

Thanks for the reply. I had never heard of peripheral neuropathy till this year. Looking back, I've probably had it for a while. I too had carpal tunnel syndrome in both wrists in my late 20s. However new symptoms started showing up after having my kids & seemed to get worse... maybe with age? I'm 42yo. I'm sure my last Dr thought I was a hypochondriac, and the Internal Med Specialist he sent me too was a complete quack. Glad I moved from BC to Alberta (Canada) so I got a new Dr that took me seriously. I think the hardest part is I use to be very athletic, but now I can barely run, and I loved to run. I walk now with hiking sticks for balance, and do lots of core exercises. I do what I can to keep muscle tone, but it's just not the same... I get so tired so easily. I'm also big on my supplements. I take calcium/mag, multi-v with 18 mg zinc, 5,000 ui D3, and B12 & pre-biotic & pH balance. I've been tested for all deficiencies, and they always come back within the proper normal ranges. Thanks for asking. I know how important it is to be on top of your vitamins & minerals with Celiac (or any autoimmune disorder). Do you take any other meds? They have me on Amitriptiline that helps with the numbness and tingling. I've been dealing with this constant numbness/tingling/pain from face to fingers to toes this time for a steady 6 mths now.... it's getting a more than a little annoying , but just gotta keep pushing on.

Wishing you all the best,

Amanda

Hi Brianne,

I am just like you with respect to migraines. I started getting them all the time starting at 13yo. And like you, I tried everything! Nothing worked. Others that took meds for their migraines that worked always recommended theirs to me, and none of them worked. I also tried feverfew with some success, but just as a precaution to you and Freeatlast, feverfew is a blood thinner and should only be taken for 6 mth at a time, then stopped for the same period of time before taking again. It was when nothing worked for me that I started looking at more natural and holistic methods. But it was a long time before I found out I was diagnosed Celiac. Going gluten free I found that not only was I feeling better, but NO MIGRAINES! It's been a long learning road to gluten-free, because of all the hidden gluten out there. But I found that whenever I got a migraine, I found the gluten culprit. I am taking Amitriptyline, but it's for peripheral neuropathy (a partner in crime with Celiac), but interestingly enough it's also used for migraine maintenance. It also does not cost an arm and a leg like other migraine meds. A 1 month supply is approx $15 (in Canada).

Good luck and best wishes to you. I think once you get the hand of going gluten free, you'll start feeling amazing, and not go back! I have no desire for anything gluten (just chocolate ).

Amanda

I haven't been on this board for quite some time. Mostly because I was having some very interesting symptoms that stemmed from a very bad fall on ice this winter. My Dr, Internal Med Specialist and Neurologist all suggested I might have MS. I also remember reading about how people with MS are mistakenly diagnosed as Celiac. I figured I was one of those. But finally after all my MRIs, I do not have MS (or what my Neuro said, you have not yet developed MS - I'm guessing to cover her butt in case I do). However, I have classic symptoms of another condition that I'm being tested for, Peripheral Neuropathy. I decided to google it and Celiac together and found multiple articles of the relationship between the 2. I have to admit that I never thought I had MS. I had read about peripheral neuropathy when I was first introduced to MS, and felt that the symptoms I have are more in-line with it. So now I've decided to come back to the Celiac boards once again.

So, has anyone else found/read/or have Celiac and Peripheral Neuropathy or another condition? For me the symptoms co-related with car accidents, work stress, pregnancy/childbirth, and now this bad fall. And I'm finding it so interesting that undiagnosed Celiac can lead to all sorts of other conditions. And I'm glad that there is so much more information available even from the last couple years! I've been gluten-free for 4 years now (when I was 1st diagnosed), and I'm amazed at all the gluten-free sections in grocery stores, and gluten-free menus in restaurants.

Anyway I just wanted to say hello again! I'm back! And wishing everyone well!

Amanda (aka GirlScout)

Hello all! I was looking at Gluten Free cereal, specifically one produced by Nature's Path (in Canada). The box had a big "Gluten Free" boldly printed on the box, and below in smaller print, "corn, flax and amaranth". I'm going to double check, but I'm pretty darn sure that I read on a list that amaranth is another type of wheat, like spelt? If it is, I'm going to sent a msg to the company. Thanks and take care!

Sorry to hear that you are suffering right now. I hate it when I decide (half heartedly) not to pay close attention to ingredients and end up suffering the consequences. Hang in there!

I didn't know there could be problems with lotions and makeup? I always had problems finding a cleanser that would not make me breakout with ezcema on my face until I tried Aloette Cosmetics. It's the only one (so far) that I like that doesn't cause that problem. I've never checked the ingredients, but would it actually say "gluten" or is it a "hidden gluten" word? I find that I will get these teeny-tiny pimple like bumps on me if I don't use the right body soap. Thanks & take care

I'm so sorry to hear about what you are going thru. It's not easy being a teenager let alone with celiac that no one seems willing to help you out with. On the one side, you are taking matters into your own hands, and at such an early age, your getting yourself educated on this, but don't have the resources to deal with it. You can get some good information from this site, but I would also, like a pp said, go to your school counsellor or nurse, or maybe a youth drop-in centre. They hopefully could arrange a sit down with your parents, educated them and help with the situation. My heart goes out to you. I hope you can get this sorted. It really sucks that gluten-free foods are expensive... seems like everything we should be eating is expensive, and all the bad stuff is cheap... go figure? Take care, we all need a good rant every once in a while.

Thank you all. And you are all right. Personally I guess I don't need "that" test. I'm just having a really bad few days, and I just can't pinpoint it to where it came from. When I read that "every crumb counts", my hubby's response just hit the wrong nerve. I'm pretty sure it was the "gluten-free crust" pizza I ate, because even though the crust was gluten free (it was homemade by someone else), I'm pretty sure the sauce had gluten, or that they used the packaged shredded cheese.

I really wish I could get my husband to read these posts, but if it's not about boats, motorcycles or home theater, he's not interested in reading it. If I tell him about something I read in an article, blog or forum, his usual response is "I don't know..." as in "oh I don't know if I believe that". Infuriating, I know.

mommyto3, my pain is just the same, I'm doubled over in a cramping abdominal pain, it has me in tears, and I can't do much but ball up and wait for it to pass. But did the Dr do any tests on your gall bladder, and it's healthy otherwise? There will be times when I move the wrong way and I get a "charlie horse" in my ab muscles, and it's not because I need to strengthen them, but I think that has to do with mineral deficiency. I'm fine if I'm taking my supplements.

Thanks again everyone!

sorry, a little off topic, new here... but what is DH? Thanks

Hello all! I'm new to the forum after lurking for many months. I've gotten some awesome information from this place, but I really need to find out if I really need or can be diagnosed. It's not like I want to be Celiac, but at least I would know, and my husband would know. First of all, he is very supportive. He knows I am GI because he's seen me thru self-diagnosis (I am also lactose intolerant thru self diagnosis). However, he thinks it is not that serious, and that when I have one of those "hmmm" moments where I read something that sounds just like what I'm going thru, his usual response is "that's not you, you're not that bad". It drives me crazy, because, well, obviously, how would he know? He's not a Dr, nor has any background in nutrition (I do). And he doesn't feel how I feel.

Here's is my background. Since I can remember, I have suffered from stomach pains, head aches, and canker sores, and eczema (on my scalp). As a child, I came home from school often due to my stomach pains and headaches. My Mom, and there is no blame there, just figured it was anxiety, stress, and family Dr agreed and paid no mind to it. It never got better, and headaches by 9yrs old turned to migraines (with aura). Stomach pains also continued, and it was like I had a constant cold (I have no allergies - tested). College was tough, and I used all my sick time with work. I then started getting sinus infections, lung infections, and (what they figured) was heat and exercise induced asthma, and anxiety attacks. I'm fit and active but constantly having aches, pains, and strains (I also had carpal tunnel syndrome in both my wrists - operation solved that). Other things were extreme fatigue & brain fog, iron & calcium deficiency, gas, bloating, diarrhea &/or constipation. Dr's always just said, eat right & exercise.... but I did, I ate whole grains (LOL), and low fat dairy (LOL), lean meats, fruits & veggies, just like I was taught. Never getting better, but always just living with it because I didn't know what else to do. BTW, no migraine meds worked for me, they were pretty much weekly.

It got worse after having children. One day I was in extreme pain, and I finally had enough. I went to emerg because I couldn't wait 2 wks for a Dr appt. They thought it was my gall bladder and sent me for u/s. My Dr said results showed it was fine, but they found a cyst on my liver... that sent me on my way for a bunch of useless tests for my liver (mri & catscans, and barium swallows bleh). Finally, Dr sent me to a specialist. The "Specialist" was no help. He said a couple things gave him concerns, and that was my cortisol levels were extremely low for a normal person. 2nd test still showed low, but on the very low end of normal, so I was normal. He then told me, that because I was pushing 40 yrs old, a SAHM, slightly overweight, that I should just get out and exercise and eat right. I wanted to tear his head off (but didn't), because I felt like he just called me a fat-old-mom. I just cried and said, I do, I exercise everyday, and also eat right. He then suggested that I might be gluten and/or lactose intolerant, and told me to go off of that for several weeks and see how I feel. I didn't at first, but then my Mom called me after watching a show on Celiac and Gluten Intolerance. She went to this website, called me and said "that's you". So I went gluten-free (and Dairy), and was feeling pretty good. Then after about 3wks, I ate a slice of pizza, thinking we'd see how it was. Well after about an hour, I was on the floor curled up in a little ball in extreme pain. This was followed by a migraine 2 days later, and feeling like crap for the next week. Well that was it for me. I stayed gluten-free, discovering hidden gluten, and what grains are actually gluten too (spelt, barley, amaranth, etc). Stomach pains, migraines and fatigue are now mostly my indicators that I've inadvertently eaten or cc gluten (few and far between). I haven't had to use my inhaler at all since I've gone gluten-free, and no more infections. I'm feeling better than I have in a long time.

I decided to go back to my family Dr because I thought I should get tested for Celiac, and I heard there was a blood test. I just wanted some peace of mind. He told me there is no way I could be Celiac because I was overweight (not by alot), and I didn't have diarrhea all the time. I tried to tell him about all the recent advances, but he just said fine, gave me a blood test, and was smug in his advising me that my count was too low to be considered Celiac. I had just read (after my test, before my results) that being gluten-free will produce a neg result (I've been gluten-free for over 1 yrs now almost 2yrs). He said it didn't matter, and to stop diagnosing myself. Everything I read is that it does matter, and that I need to be on a gluten diet for at least 3 mths. I just can't do that, or rather I will NOT do that.

So my questions are, if I am Celiac, and don't know it, but am gluten-free, do I really need a test? If I'm fine on a gluten-free diet should that be enough? It is for me, however I'm tired of this "oh, your not that bad" attitude about being GI, ie: hubby not thinking that "every crumb matters", and I don't know how to convince him if it really does. And are there any tests you can take that would make that determination without going on a gluten diet? I know there is a genetic test ($$) but how reliable is it really?

Thanks for listening (or rather reading). I know, it's long. Thanks again!

Is it too early in the morning for wine? I'm new, and will be doing another post, but my moment just happened with my husband... just now.

Me: Wow, it says here that "every crumb could matter". Maybe that's why I was in so much pain last night? (We share all surfaces, as well as butter, mayo... I try to keep crumbs out.)

Hubby: Oh well that's not you, your probably not that bad... I doubt you're that sensitive...

(really are you a Dr or specialist? ARG)

Me: Well you just ate a bagel so I'm not going to kiss you.