Aly1

Oh and btw, way to go for fully healing yourself!

I am relatively new to gluten-free after a decade of severe muscular problems that landed me in a wheelchair, so I found your post very interesting. Pain issues aside (and they were major till I got the chair and just stopped using the muscles) my muscles would tighten up more and more with every contraction. They would feel weak for hours, then days as my illness progressed. I have yet to really hear a good explanation from a doc as to what is causing this muscular issue so reading your post was really interesting to me.

How long after supplementing with glutamine did you notice a difference? How much did you take (of course I undoubtedly need less as I'm a 100 lb female). What brand is good? Are there other similar aminos that you supplemented with that you feel helped specifically with the muscle problems or is glutamine the main one?

Thanks for any advice you could share!

I have been gluten-free for 5 months and was under the impression I'd been tested fully for celiac and tested negative. (I get really ill now from gluten so it's a given I have an issue regardless of testing). I discovered at my latest doc appt that he only did a stool test (I know he checked for malabsorption issues and I was ok; not sure if there are any other stool tests he might have done to check for celiac) so based on that he decided I do not have celiac.

Do you all consider this testing valid? I confess diagnosis is important for me but I guess that ship has sailed bc I'm not able to tolerate gluten long enough for a challenge. I'm just frustrated bc I thought I was totally tested.

[quote name='IrishHeart' timestamp='1328471325'

Everyone has made good suggestions, and I do not disagree with them-- but it is wise to have a baseline level done before supplementing to make sure you are getting an adequate amount. IMHO

I know everyone says there is no unsafe level for taking some supplements, but my doctor feels otherwise and in my case, over-supplementing with B vitamins (especially B-12) was causing more harm than good. You can develop toxic levels, apparently.

Just my experience. Just my opinion.

Please, everyone--don't start scolding me and sending me articles off the internet.

I HAVE read them all, honest!

xxoo IH

the head of the gastro dept said our daughter had no issue with gluten and to keep her on a normal diet, we ignored the moron and in the last 2 weeks she has gone from a 7.5 to 9 in shoes and grown 1 inch!

Wow! Wow! That's great!

I do get this, i thought i was the only one on the planet . I recently had that for the first time in 25? yrs. I used to get it all the time as a teenager and I noticed it several nights ago. I imagine it's an intestinal spasm? I never have any GI symptoms from gluten but maybe that is one and I didn't just know what it was! I've been gluten-free for 5 months, maybe I got glutened or something, I don't know... I don't worry about it too much as its not a constant thing..

Hmmm, that looks like what I get and what I get is atopic dermatitis. I developed allergies to my baby's wipes and whenever I use them that's what I get down the inside of my finger. It's super itchy and before the welts/bumps appear sometimes it stings a little first.

That being said, it sounds like you really tied your rash to gluten already?

THanks!

The carrot cake and brownies are from the Gluten Free Goddess Cake - Open Original Shared Link

Brownies - Open Original Shared Link She's updated her recipe so it's dairy-free too although the original with butter is to-die-for if you can have butter. I makethe carrot cake dairy free and use earth balance for the frosting and no-one has ever complained...even my non-gluten-free and non-df daughter!

Yay, thanks!

Happy birthday and thanks for sharing your story. Can you share something else? I'd love a carrot cake recipe!!

I found that the longer I was gluten free, the more sensitive I got to lower levels of gluten. Symptoms returned without me changing anything. I had to change things to make the symptoms go away again.

What helped was to keep a food/symptoms journal. That helped connect the symptoms to certain food items. It also helped to become more aware of possible low level cc issues.

I hope you figure things out. It's no good going around looking pregnant when you aren't.

Well I am used to dressing the belly (loose shirts are a staple!) since I've done it all my life! I just discovered I have problems now with onions, maybe that's what was doing it? We'll see...

Hmmm, I don't know anything about leaky gut. Anyone else?

AHA! Onions. Another piece to the puzzle?

Yes! You'd think at this stage it wouldn't surprise me but it's always the foods you least suspect, isn't it. I have to research what's related to onions and make sure there aren't other things lurking...

That's interesting I'll have to look into that. I can't tolerate popcorn, tortillas, raw corn, without getting a severe case of indigestion and flatulence and nausea. When i drink soda, same way.

Hmmm, it definitely sounds like corn could be an issue for you, and thats a common one. Is the soda you drink sweetened with high fructose corn syrup? Like I said before it's common to have a number of sensitivities come to light once you remove gluten, I don't know why. Just last night I had another a-ha moment when I realized I'm having problems with onions! I'd thought I was having digestive issues because I was eating a lot of beans - I figured it was normal to be gassy if you're eating a lot of them - but when hubby prepared the same beans without onions (he just forgot to add them as he usually does!) I didn't have any problems. It was the onions all along and I had no idea. I've been suffering for 2 months for no reason! So we basically have to be detectives and sometimes along the way the answers just come when you least expect it. Hope you have some more a-ha moments of your own soon .

Thank you. I got use to live like this, but sometime I will get angry at the situation and I'm trying to look for the answers. Like now.

I turned to you for help.

Thanks again.

Don't ever settle with this illness or "get used to living like this" - you are fighting for your life literally, don't ever give up!

If you can't eat sugar well, you really, really, really need to look into fructose malabsorption. Chicken and rice soup is very low fructose if you use white rice. So are most steamed veggies and salad greens.

The Wikipedia article on fructose malaborption isn't too bad.

Open Original Shared Link

This site is by a woman with fructose malabsorption who set up a wiki for reference.

Open Original Shared Link

I find fructose malabsorption very interesting, but it's different from what I have in that fructose was a go-to for me for many years to avoid glucose and other sugars. It's just with my recent corn issues that I can no longer tolerate it, as it's corn-derived. I post this so that the OP understands that there are a couple different types of sugar intolerances, one where you avoid fructose, the other where fructose is fine as it causes a slower rise in blood sugar levels (which is along the lines of what diabetics require from sweeteners). There are a host of foods I avoid due to their glycemic impact but it's too lengthy to go into here. If you discover in the end that your sugar issues align with what I've described, please do message me and I can send you the whole diet (the other foods will also make you feel lousy too). Good luck

. I've been there. Where you are hungry and overwhelmed and sick of thinking about it, and know that anything you put in your mouth is going to make you feeling lousy. Just this week I figured out my corn-derived sweetener issue and removed it (I am eating muffins out the wazoo bc I was dropping weight like crazy. Now they are totally unsweetened muffins. Yum. Not.) and it was like everything felt different overnight. It feels like such a relief physically to have that gone. Hang in there, really, you are trying to figure out what works for you and it's really really hard. But at some point you will get there - and it could be sooner than you think! - and you will know what to eat and what not to, to keep yourself feeling good.

Thanks guys. I been making homemade chicken and rice soup and I seem to feel better the next day. But anything other than rice and steamed vegetables and salad seem to make me feel horrible. I know I can't tolerate soy and dairy that well or eggs. Can people be intolerant to sugar? Candy and sweets make me feel really bad too.

Absolutely!! Omg, eating sugars messes me up so bad, just as bad as gluten does! Its hard bc I have Such a sweet tooth, but I can't tolerate any of them. Well that's not true - I can eat what diabetics eat sweetener-wise, and do well. (well I could until I developed issues with corn and learned that my go-to sweetener fructose is derived from that and now messes me up!) I've been off sugar for 25 years and getting off it changed my life. Seriously. Try investigating diabetic-approved sweets and see if you feel differently. If not, eliminate it entirely.

Well, it seems that a lot of us who go gluten-free become very sensitive to other things in our diet. My doc says when you take the biggest offender out of the picture, other things bubble up to the surface. For me it was corn and anything derived from corn, even sweeteners. I'd been having those for life without any perceived problem, but now that I'm gluten-free they make me feel sick. So you just have to test to see what is making you feel bad. It sucks after going through getting gluten out of your diet, to be faced with still more foods that need to be removed. At times it can be overwhelming but when you find what's making you sick and you get rid of it, you will feel so good it will be worth the stress!

So there could be a few things going on. You need to test each of the items to see which one is causing it - have a plain potato (yawn, I know) on an empty stomach and just drink water, and see what happens. If you feel sick, you know you have an issue with potatoes. (You should still test each one of the other items to make sure you aren't reacting to any of them too). It's just a process of elimination, luckily you only have a few items there to go through!

Was there anything on it? Was it the only thing you ate? What did you drink alongside it? Take any supplements after?

Open Original Shared Link

This is a big hit in the allergy community! Maybe worth looking into for the future.

Oh he's so cute!! Thanks!

I thought you had to crush the B12 and sprinkle it into your bra as powder?

I tried that. My boobs got bigger but I was still feeling lousy.

I think people are people, sometimes people are grumpy, sometimes they take things the wrong way etc. I'm not sure there is a really nice way of saying someone is wrong? Obviously they think they are right. and most people get defensive when they are called into questions I think. I just leave it - even if someone is glaringly wrong about something I'll let others say something because I can't be bothered arguing over things. Having said that - this is by far one of the the nicest forums I have ever been on. You want to see mean, b%$@#y and critical? Log onto mothers forums - I swear - they are something else

Yes Beebs, it was mommy forums I was referring to in my earlier post! Hormones...!

That is very interesting. Are there foods you are eating more of when you go gluten-free? Have you tried a food diary to narrow down why it might be occurring?

I think that's ingenious!

Why thank you