Aly1

I haven't posted here in a long time! Hello

Long story short - I had chronic fatigue syndrome for 6 years that completely resolved after going gluten-free. I still have a lot of issues with food sensitivities, feeling lousy pretty much every day, and chronic heartburn etc so something is still going on. While getting a full workup, I asked my doc if she wouldn't mind throwing a celiac gene test into the mix, as I've always wondered (and have a daughter now, so it matters more to me). 

So to my surprise I just found out that I am HLA DQ2 positive. My doc says that the result, paired with the fact that I know gluten makes me so ill, she thinks it's likely I have celiac, though there's no way to know for certain. She wants me to see a GI doc to take things further (though that may be for the chronic heartburn rather than the celiac angle, I'm not sure.

I am weighing what I think about all this and would love some input. Doing a gluten challenge would be hell and rough on my family too (they'll have to put up with me during that whole time!). I wonder if I'd be doing some real harm, in just chasing this diagnosis, that I'd then have to spend time recovering from, following the challenge. 

Anyone have any thoughts they'd care to share on this?

Thanks!

PS. In my situation, should I try to find a GI doc who's known for working with celiac patients, or will any GI doc do? (And, if I should find one who specializes - what's the best way to find one?)

Thanks both, I will check these options out! Much appreciated.

I am in desperate need of a good iron supplement asap, as the one I've been using is giving me brain fog and is therefore really suspect. I need it to be gluten-free, corn free and dairy free but something is amiss. Hoping to try a new brand (ideally sugar free too) and see how it goes.

It has to be a higher mg one - I need to take 150mg per day as I have anemia.

Fingers crossed that someone here can help!

Thanks

Aly

Hmmm. That makes me wonder if I have other food issues contributing to it - I'm on day 4 now (without strawberries). But I am eating fatty things including whole-fat dairy...

So sad, I love my strawberry smoothies. How long do flare-ups last?

I totally avoid anything that says it's made on shared equipment. I don't even care if they say they're a GMP facility. I got so sick eating muffins that had baking powder processed on shared lines...granted I was eating a lot of those muffins, but it showed me that if I want to be truly gluten-free, that isn't the way to go about it.

This might be a bit out of left field, but can anyone recommend a slippery elm supplement that's corn and gluten free? And preferably dairy and sugar free too..?

It's been quite a while since I posted here, but I'm back due to a new problem that I need help getting rid of.

Background: I am very gluten intolerant and never had gastro issues of any kind. I'm usually pretty solid in that area. I started juicing at the beginning of the year and was feeling so good on it. So good that I ignored the mild heartburn I'd get from time to time associated with it. Recently however I developed major heartburn problems - stabbing pains in the center of my chest, burning, bloated feeling, sore rib cage by my stomach - which seemed to be related to strawberries (I was having smoothies several times a week with them). I stopped juicing since I knew that was a small problem before, and quit the strawberries too, and did a 14 day course of OTC drugs (opremazole or something like that?). It resolved about 3 weeks ago and I stayed away from juicing and strawberries. I still felt mild issues here and there but seemed ok.

It's back now. Big time. I had a couple of smoothies a few days apart, and bam, I'm back at square 1. I don't see how just 2 smoothies can render me in this condition ~:0/. It seems that so many things are setting it off now (it's been days since I had any strawberries but I'm still having major issues), I just don't even want to eat.

Some questions for the experienced: 

1) I really want to get back to juicing - is this something that often causes gastro issues? I make sure to "chew" my juices before swallowing so I know the right enzymes are getting in there. 

2) Can 2 strawberry smoothies do this, or do you think I have other hidden food issues? I've been a food sensitivity *queen* since going gluten-free...

3) Would appreciate a good course of action. I'm desperate here - I feel like I can't bear to restrict my diet any further. I'm usually gluten, corn, grain, dairy, and sugar free and have dropped down to 97 lbs as a result. I recently gave up on the grain and dairy (despite the reaction I get from the latter) because I am desperate to just eat.

I'll be grateful for any advice I can get on how to get better. Thanks!

I've got to say that I think Dejibo is right - she came here for support and was feeling overwhelmed, and the response she got was to have her current diet picked apart and having to defend it. She didn't ask anyone what they thought of her diet. It would be one thing to have a single person gently warn about being lead astray by people with the best intentions who might or might not have the right background to help her, but to be questioned several times on its validity isn't cool. Someone asked, she answered. If this is the path she wants to take with her health, that is totally her right. If she'd asked for opinions on it it would be another thing entirely. How about some white kid gloves for someone who's been through it and is already overwhelmed. :/

If possible, try to rotate the foods you are eating. When I did an elimination diet, I was eating copious amounts of brown rice every day, and soon my body developed an intolerance to rice. Thats not to say you will have this problem, but If you do have multiple relatively "new" food sensitivities I would give this some thought.

I think you're right -I do plan to do a rotational diet after completing my elimination diet!

When I did my strict elimitation diet I ate ground lamb ( easier for me to digest ) white rice ( again for me eaiser on the tummy) pea,carrots, canned peaches . I also ( now that I think about ) used olive oil to make these foods into a stir fry . No coffee ,tea or other dirink execpt water.

The key here is strict.

You will need the rice or sweet potatos ( or something carb heavy ) for the calories.

I ate ONLY these foods for about two months before starting to add foods back ONE at a time. And would wait about a week to 10 days after I reinterduce a food before I would declare it a safe food.

A very very slow process but necessary for some of us.

Three weeks is not long enough for an elimination diet ( from My personal experience), it can take longer than three weeks for reactions from foods to clear out of your body.

Baaagh, longer than 3 weeks. Omg I already thought it was way too long. How long should I mentally plan for here?

And are there any starchy alternatives to rice and sweet potatoes? I hesitate to try a new food right now but maybe I have to. I feel too that I need it (starch) if I have any hope of not losing weight, but I would be surprised if rice isn't an issue for me, after eating it 2-3 times a day (in various other forms, more often than that!) for the past year. I am tired of being sick and tired and just want to do whatever I have to do and get it over with, you know?

Unfortunately I really hate sweet potatoes! . You hit the nail on the head about brown rice - I eat it all the time - and suspect I should do a trial without it. But I don't eat any other grains so I'd be down to just veggies and meat...unappealing thought.

Very interesting. How long are you supposed to wait before eating the food again, when doing the rotational/diversified diet?

I am gearing up to do a strict elimination diet leaving only non nightshade veggies, lamb and turkey, and maybe brown rice (not sure in an part with that one, though I probably should.) This is going to be tough because I really don't like proteins and only eat them because I should. It's really important that I don't lose any weight because I am down to a gaunt 100 lbs and struggle to keep that on to begin with...

I'd really appreciate any advice from anyone who's been there, done that. How to eat during the 3 weeks I do this? Any pitfalls to avoid? I'm dreading this. Maybe there's nothing anyone can tell me, but I thought I'd check in here first...

Just be sure the gluten-free products you are eating are CERTIFIED gluten-free. Otherwise they may not actually be gluten-free at all...

Thanks everyone for all the great ideas and replies. My 3 year old and I both got sick at the same time and I'm only just catching up. I just have to say how much I appreciate all the help I get here on these forums, you're all a big goldmine of information and support!

What about other food intolerances? Have you tried an elimination diet? I found that corn was a huge culprit and that I felt as bad eating that as I did gluten... Perhaps there is something else in your diet that's causing your fatigue.

Thanks for the great ideas, I'm looking into them and hopefully one will work!

Unfortunately I'm lookin for the Easy button! I am not well enough to grind my own etc - it's actually my hubby who makes my muffins for me and he's got so much on his plate already. We've been using Bob's All Purpose Flour (never noticed that there's a soy warning on it :/ !) but I recently discovered that corn is a major problem for me and they process corn on their machinery (supposedly they have practices in place for cleaning but on my corn board there have been reactions so I want to steer clear of it...) Am just hoping there's someone here who also has a corn sensitivity that's using something they trust...

I'm going crazy trying to find a flour mixture I can use without the concern of:

dairy

corn

gluten (obviously!)

gums

sugars /sweeteners

Every time I think I find one, I discover a reason I can't have it (eg I find the brand on my no-corn list...)

Anyone here use a brand they trust? I've eliminated King Arthur's and Bob's Red Mill and a few others and I'm getting frustrated...

Good to know. Thanks all!

I will have hubby stop by the health food store and pick some flaxseed up. I thinky one ofthe many foods i am supposed to avoid is prunes, so rather than go searching to find the list that has that on I will just opt for the flaxseed route.

Any concerns with brands that might have gluten contamination? I gave up on eating sunflower seeds bc I was reacting to them (this was in my ultra sensitive phase...no idea if it was gluten contamination - I assumed it was - or a problem with the seeds themselves...I didn't bother to find out at the time as I had too many other dietary issues going on!

Oh, I have given it up, but every now and then in a moment of desperation (eg I'm having a low blood sugar in the mall and the only thing available is my daughter's cheese that I've packed for her snack; or yesterday when I took an ocycodone bc I had my wisdom tooth pulled, and it started attacking my stomach almost immediately. Had to grab a milk at the store before going home...). But the result is always the same and I need to find something fast acting to help..!

Wondering which of the above suggestions will work the fastest!

Ooh these are some good suggestions. It happens whenever I have the slightest amount of dairy. I had to grab some milk to coat my stomach before taking some medication, and so I know what's coming...?

What can I do to treat large bulky stools? I am do constipated I can hardly pass them. Can't have laxatives that contain dairy, corn or sweeteners. Anyone know what I can do that's fast acting?? ?