Irritable And Overwhelmed

[Marie1976]

I know, all I do on here is vent. I don't know why I've been feeling so wretched and depressed. I keep reading stories of "oh how much better I feel now that I'm gluten free!" I'm ready for that to happen! I am STILL SICK three months into this. Everything I eat says it is gluten free so I guess it's the cc that's doing me in. Or something else? Who knows?

Reading this board has helped me A LOT but has also confused me. Everyone suggests different things that could be causing problems, from soy sensitivities to nutritional deficiencies to cross contamination, etc. How do you figure out what is causing the problem? Should I just eat nothing but rice and water and then slowly add things back in?

I have depression, anxiety, fatigue, stomach problems, insomnia, irritability. Even my PMS has gotten worse since going gluten free. I read on here that Xanax helps people but then I read another thread that says it has gluten in it! Enzymes? Vitamins? Where do I get all of this stuff? Is it vegan? Does it really help? Trying to figure out what I should do is so overwhelming.

I just want to feel better. Why does this have to be so complicated?

[Fairy Dancer]

Are you vegan? If so are you getting enough B12? A B12 deficiency can cause some of those symptoms.

[samie]

I would say eat only whole foods like fruits, veggies, and meat. Then slowly add something back each week. You could also ask doctor to get checked for other intolerences. Also check and make sure all your shampoos conditioners soaps and anything else you use is gluten free. Also you could keep a food diary.

[ravenwoodglass]

Go with whole foods for a bit as that will cut down on CC risk. Make sure you have made your home as gluten-free safe as is possible. New toaster, seperate condiments etc. If you take any script meds do check with the maker to be sure they are safe. As to the Xanax, the name brand is not gluten free but the generic, alprazolam is safe. The vitamins can be found in your local grocery, drugstore or health food store. As was mentioned sublingual B12 may help a bit.

Some of us do go through a withdrawl and that may contributing to the mood issues. If you do get glutened or CC'd frequently then that could keep the withdrawl going.

Hopefully you will be feeling better soon.

[Bubba's Mom]

Another thing I thought I'd mention..if you're 3 months into gluten-free, you may not be absorbing the vitamins and minerals in your foods yet? I was just reading last night that it can take at least 6 months(or more) for villi damage to repair enough to work the way they're supposed to. I know we think we should see immediate results and it's disappointing not to. Stay the course.

I'm fairly new to this myself, having been Gluten-Free for les than 3 weeks. I see a little improvement with the severe pain after eating anything, but I have SO far to go! If your anxiety level is high (understandable given how careful we have to be) it can be due to low vitamin/mineral levels too. I take the generic Xanax, easier than saying alaprozolam and more widely recognized. If you need something to help you through this rough patch..ask your Dr. for an RX?

(((hugs)))

[T.H.]

First - so sorry you're still ill! I didn't get well at first, either. I was feeling awful for a while, so as many *virtual hugs* as you need.

Second - What are your symptoms? It's frustrating beyond belief when you're still sick, and like you said - LOTS of different things can cause problems. It's so very hard to figure out which things cause our own particular problems, often because doctors are rarely of much help. Or cost too much to work with us long enough to BE of much help, even if we find a good one. I know for me, even with good doctors, I felt very isolated and alone and overwhelmed. There was so much to figure out, and I was so miserable while I was trying. So knowing symptoms, some people might have some ideas.

Things you may want to check into:

- test for vitamin/mineral deficiencies by a doctor, if you can afford it. That can help you know if this might be part of the issue.

- drop the gluten-free processed food (crackers, chips, cereals). This can help if you are reacting to gluten cc of the gluten-free food. Processed food tends to have more gluten cc risk. 'Gluten free' is just a legal term defining the maximum gluten a food can contain and still be called gluten-free. So, it doesn't mean 'zero gluten,' sadly. Some celiacs are fine with the amounts in processed gluten-free food, some aren't. The only way to know for yourself is, unfortunately, dropping and foods and seeing if you do better. Whole grains, too, are more of a gluten cc risk than fruits and veggies, but less than processed foods, usually.

- drop the gluten-free processed foods to see if you are reacting to something ELSE in them. Some ingredients that are more common in gluten-free foods cause trouble, especially gastrointestinal issues. In the gluten-free foods I've run across, they tend to have more gums (xanthan, guar, arabic), more sugar, more eggs, more potato, more tapioca/cassava, more corn, or some combination thereof. The sugar also tends to be less processed, so it contains more allergen, which could be an issue if you're actually allergic to sugarcane (*raises hand for that one*). Dyes, preservatives, and artificial flavorings are also something that celiacs may find themselves reacting to.

- Keep a food journal. Seriously, this is invaluable. If you think what you eat is getting/keeping you sick, the best way to track it is with something like this.

- You said you're a little overweight, yeah? I'll pass on what I did, when I was overweight too, just in case. I STARTED having gastro symptoms when I went gluten-free, and I didn't eat for a few days, except water, pretty much, because I thought I had a tummy flu. I started feeling MUCH better. And when I started adding stuff back in, it was really clear, really fast, what worked and what didn't. I ate a carrot - no problem. I ate a piece of bell pepper - no problem. I ate some peanut butter - BIG problem (turned out to be the sugar in that particular peanut butter).

But when I went down to no food, and felt better, it was so much easier to tell when I'd eaten something BAD. That didn't always mean I knew exactly WHY the bad food made me sick, but it was easier to track with the food journal.

Sometimes it turned out to be the food itself, like sugar cane (even got an allergy test on that one, and it came back positive). Sometimes it turned out to be a pesticide on produce (which is a good reason to write down companies/farms on a food journal. If all the food from the same farm makes you sick, that's a good clue there's cc from something). Sometimes it turned out to be gluten cc of a food.

I know there are many conditions and issues a lot of us have, but, well, that 2-3 day fast helped me with one thing that at least gave me hope: if I got better without food, then that meant it WAS the food that was making me sick, and not something else, you know?

Wish I could offer more...I'm sure others will have some ideas for what else can be looked for, in easy ways, hopefully! :-)

[Maharlow]

I am currently having a severe "flare up" myself. I am having so much pain and incredibly depressed as well. I want to just cry and I don't even know why.

Are you drinking milk? I couldn't safely drink milk until recently, and I have been gluten-free for almost a year now. I read somewhere that the very tips of the villi in your intestines are used to break down milk, and if they are severely damaged (as mine were) you can't break down the milk and it can cause some of those same symptoms.

I agree with the others. Get rid of that processed gluten-free stuff. Can always try the BRAT diet (banana, rice, applesauce...sorry no toast). Those items are supposed to be easy on your digestive track.

Keep you head up......

[eatmeat4good]

At my worst I could only tolerate meats, meat broths, and water. Slowly add in one food at a time...give each new food at least 3 days. I agree with the others to have vitamin levels checked. Protein helps you heal. Be sure you get enough. Are you vegan? If so, sorry bout the meat suggestions.

[Brooksbelle]

I'll second the food journaling suggestion. After much foot-dragging, I finally bit the bullet and did it--it's the only thing that's helped me pinpoint my food intolerances; including the gluten thing.

[veruca]

I am so sorry to hear that you are going through this. I know you probably hear this all the time, but many people on here know what it's like to struggle with illness and questions.

I would go to your GI specialist and discuss what possible deficiencies could be the root of your problem. Blood tests could bring you closer to an answer and something as simple as a vitamin could help you out.

Good luck

[Marie1976]

Thanks for all the suggestions! I am going to try some of them. I can't live this way anymore. Last night I didn't get any sleep because I was dizzy and nauseous and vomited all night. Vomiting was never one of my symptoms but apparently it is now.

I wish I knew what I ate that made me sick. Is this sensitivity to crumbs (!) a lasting effect or does it go away after a while? The thought of getting this sick every time I am accidentally "glutened" makes me want to never eat anything again ever.

[Marie1976]

And no, I don't drink milk. I have been a vegan for about 10 years. I suppose it's possible that I have a sensitivity to another food that I'm unaware of though. Would a sensitivity to say, nuts, or potatoes, cause dizziness and vomiting? Or is this more likely an accidental glutening?

[Marilyn R]

I've been in your shoes and it is confounding.

I'm still not sure what helped me the most, rotating my diet, eliminating similar proteins. or just time.

You could actually be having a problem with legumes since you are vegan. But I'm not an expert, and could be giving you utterly unsound advice. The protein is similar in structure and your cells that have been deprived of their warrior gluten want to attack, so they may have decided to attack the protein in legumes, which is similar in structure.

Could you try introducing fish or eggs for protein for a while just to see if your health improves? You will need protein, even crave it to get better.

I didn't do well with alternative grains, but everbody is different. Hope you find the answer and feel better soon.

[badgerette]

Just want to say I am in a similar situation. I am vegan too, and just now trying a gluten-free diet. I am frustrated with feeling better most days, but then crashing and feeling terrible on other days. Maybe we both need to go down to eating rice and water and reintroduce things. Sounds impossible, but we can do it...

[Marie1976]

Maybe I should just try rice and water for a while. Good idea. I don't know how long I could go with that though!

Someone suggested that maybe my problem the other day was a migraine. Headache, nausea, vomiting... I've never gotten that sick from a headache before but maybe a nutritional deficiency or hormones could have triggered it? My hormones have been crazy since I went gluten-free for some reason (like permanent PMS).

Anyone else have experience/words of wisdom regarding hormone problems or migraines? I have some migraine medication my doc prescribed several months ago but I don't know if it's gluten-free so I'm afraid to take it.

I'm going to go out of my mind constantly trying to figure out what's wrong, or what I ate!

[ravenwoodglass]

Maybe I should just try rice and water for a while. Good idea. I don't know how long I could go with that though!

Someone suggested that maybe my problem the other day was a migraine. Headache, nausea, vomiting... I've never gotten that sick from a headache before but maybe a nutritional deficiency or hormones could have triggered it? My hormones have been crazy since I went gluten-free for some reason (like permanent PMS).

Anyone else have experience/words of wisdom regarding hormone problems or migraines? I have some migraine medication my doc prescribed several months ago but I don't know if it's gluten-free so I'm afraid to take it.

I'm going to go out of my mind constantly trying to figure out what's wrong, or what I ate!

You need nutrition. Starting out with rice and water is going to provide very little nutrition so perhaps add some fresh cooked veggies and some sweet potatoes to that.

On the med bottle for the migraine meds look for the makers name, it usually is in very small letters on the label. Then call the maker. You can get their contact numbers by putting the company name and the word contact in a search engine.

The mood issues may be withdrawl and if that is the case that should ease up after you have been gluten free for a bit longer.

[Bubba's Mom]

I used to get migraines with severe pain on the left side of my head. Since going gluten-free I've gotten several with severe dizziness and nausea. I've read those symptoms come from a constriction of blood vessels at the base of the neck, but still a migraine.

Call the pharmacy that dispensed your medicine and ask them to check if it has gluten. If not, take it and try to keep cool and quiet afterwards. Good luck!

[Marie1976]

I used to get migraines with severe pain on the left side of my head. Since going gluten-free I've gotten several with severe dizziness and nausea. I've read those symptoms come from a constriction of blood vessels at the base of the neck, but still a migraine.

Call the pharmacy that dispensed your medicine and ask them to check if it has gluten. If not, take it and try to keep cool and quiet afterwards. Good luck!

Thanks! I called the pharmacy and they couldn't tell me. Apparently the medication (Epidrin) was discontinued in February. So I'll have to ask my doctor for something else I guess. Sigh.