Please, Help...

[Byte Me]

Hi all,

It's been a long time since I was last here. You all were so very helpful then, and I'm hoping someone can help me now.

I've been gluten-free for nearly 3 years now, I think. I've backslid a few times, and paid for it dearly. Won't go there again!

Lately though, it seems like *everything* I eat except watermelon and berries and frozen veggies is making me sick(nauseated, headaches, acid reflux). I am having what I believe is "dumping syndrome" very frequently...to the point where I almost can't eat at all on work days, not before or during work anyway, I have to wait until after I get home. I've lost 4 jean sizes in the last month/5 weeks. I've had headaches nearly every day for about 7 weeks. My stomach and intestines HURT. Sort of a constant ache, until I take vitamins (positively gluten-free) or eat something other than the watermelon and berries, then it is very painful. Especially B vitamins, I can feel that Niacin hit a spot in my stomach that burns like the fires of hell, and I want to pass out it is so bad. So I've been neglecting the vitamins for way too long now...a good 6/7 months.

I know I can't live off of only fruit. Milk is definitely out, anything dairy is, even yogurt I can't take ibuprofen or naproxen sodium anymore, or I bloat and hurt something awful. I can handle acetaminophen, but it doesn't really help the headaches and body aches.

I have run out of options as far as doctors go. No health insurance, and I don't really trust that they will do anything more than throw another useless prescription pill at me anyway.

I am lost as to what to do next. I am depressed again, that is the worst part, because going gluten-free relieved nearly a decade of clinical depression. My thinking has become cloudy again like it was before I was gluten-free. I have checked and double-checked all cosmetics, shampoo, detergents, etc. Nothing with any trace of gluten.

If anyone has any suggestions on what I could try on my own...foods? Alternative medicines? Anything really, I will be so grateful.

~ Jenn

[ravenwoodglass]

You really need to see a doctor, I know you don't want to hear that but that is what needs to be done. Check and see if you qualify for medicaid, you won't know unless you check. You could also look for a clinic in your area that has a sliding fee scale. Another option is to head to the ER when you are having a severe attack. The extreme weight loss and the degree of pain you are in are very worrisome. You could have any of a number of things going on and if you are positive that this is not gluten related and there is no way that you are getting glutened either through CC at home or at work you need to get checked out.

[FMcGee]

I second ravenwoodglass - go find a doctor. Medicaid, ER - both good suggestions. Hopefully we'll get the healthcare system worked out in this country so people don't have to suffer. But anyway. There's no way anyone on the internet who hasn't actually seen you, and who may or may not have medical knowledge, can substantially help you from here, much as we all want to. This is serious, and it's only going to get worse. It could be as simple to fix as an intestinal parasite you picked up, but you can't know that until you get looked at. I'll keep my fingers crossed for you. Keep us posted.

[Foxfire62]

Hi all,

It's been a long time since I was last here. You all were so very helpful then, and I'm hoping someone can help me now.

I've been gluten-free for nearly 3 years now, I think. I've backslid a few times, and paid for it dearly. Won't go there again!

Lately though, it seems like *everything* I eat except watermelon and berries and frozen veggies is making me sick(nauseated, headaches, acid reflux). I am having what I believe is "dumping syndrome" very frequently...to the point where I almost can't eat at all on work days, not before or during work anyway, I have to wait until after I get home. I've lost 4 jean sizes in the last month/5 weeks. I've had headaches nearly every day for about 7 weeks. My stomach and intestines HURT. Sort of a constant ache, until I take vitamins (positively gluten-free) or eat something other than the watermelon and berries, then it is very painful. Especially B vitamins, I can feel that Niacin hit a spot in my stomach that burns like the fires of hell, and I want to pass out it is so bad. So I've been neglecting the vitamins for way too long now...a good 6/7 months.

I know I can't live off of only fruit. Milk is definitely out, anything dairy is, even yogurt I can't take ibuprofen or naproxen sodium anymore, or I bloat and hurt something awful. I can handle acetaminophen, but it doesn't really help the headaches and body aches.

I have run out of options as far as doctors go. No health insurance, and I don't really trust that they will do anything more than throw another useless prescription pill at me anyway.

I am lost as to what to do next. I am depressed again, that is the worst part, because going gluten-free relieved nearly a decade of clinical depression. My thinking has become cloudy again like it was before I was gluten-free. I have checked and double-checked all cosmetics, shampoo, detergents, etc. Nothing with any trace of gluten.

If anyone has any suggestions on what I could try on my own...foods? Alternative medicines? Anything really, I will be so grateful.

~ Jenn

How old are you? I've been going through fullness feeling too, and my new GI thinks I've gotten glutened. Right now, I feel full too, and it's ever since I started a medication (progesterone) that I've called on and confirmed had no gluten (but they always give a disclaimer). When I didn't eat because of full feeling (was pretty constipated, turned out), I totally put my body out of whack in addition to losing over 12 lbs. I've become hypoglycemic, and now I'm taking progesterone replacement to help even out my hormones. My nutritionist also said my serotonin levels could be low. She tried to put me on Zoloft, but I had a jittery reaction. Don't know how I can get my serotonin levels up to par without anti-depressants.

I asked about your age because of potential hormones being out of whack, like possibly with me. You may also have an ulcer. Did you consider getting scoped again? I know you're worried about insurance, but isn't it worth it to pay for your health as opposed to feeling as bad as you do?

I'd definitely go back, but not for more meds...to get scoped again and see if there's something else going on or if this is a gluten reaction that you are unaware of.

Please take care of yourself!!! I know how it feels to feel so bad and not understand what's going on!!! You're suffering, and it's not worth it! Take charge of your health!!!

[Ms Jan]

Agree with what everyone has said. It sounds so serious, you better get checked.

But while doing so - or if the testing takes time - you might find it helpful to look into the SC intro diet (Specific Carbohydrate) or part of it, since it's aimed exactly at healing the GI system. You can find info on the thread in this forum or on the www.pecanbread.com or scdiet.org, or on the official 'breaking the vicious cycle' site. Even if you don't want to follow the diet, you might be able to pick up some useful tips for foods you can digest right here and now, particularly things like the basic chicken soup is something most guts should be able to ingest.

Good luck!

[Byte Me]

Thank you very much to everyone who has responded, I truly appreciate you.

Unfortunately I do not qualify for Medicaid; in my state, to qualify as an adult, your income must be somewhere around $100/month. Took them less than a week to shoot me down on that one.

I am going to do my best to try and scrape up enough to see a doctor, or maybe to the ER and insist they do something rather than turn me away again.

I will also check into the SCD forum and try some things there.

Foxfire: I am in my mid-30's. I suspect premature menopause, but I was laughed at when requesting a blood test to see.

To AliB: I tried to respond to the message you sent, but got an error that I was not allowed to send (something along those lines). I would like to thank you also, you were very helpful.

Thanks again to all and I will post updates when I am able so that maybe I can help someone else who may be having similar issues.

~ Jenn

[purplelion]

Hi Byte Me, I have found doctors to be a waste of time and money. I have had doctors humiliate me when I was seeking their help to get well again. The only true understanding and help I have received in more than 30 years has been from a woman Natropath. She does the VegaTest for foods, chemicals, additives and lots more, also how your organs are coping. I get a read out each time I see her and so I can judge for myself how I am slowly getting better. I also take food, that I suspect to her and she puts it on the vega machine, conferming my suspicions. It seems like a domino effect to me. I had no idea how much of what I was eating was affecting my health. I remove gluten and dairy /casin and also find soy / maize was also making me ill. You have to be like a detective and you are your client search for clues, be observant and then nail the offender for life

What doesn't kill us will make us stronger and wiser to perhaps help others

Hope this helps,

purplelion