I Can't Take It Anymore

[shadowicewolf]

It has been 4 weeks since i started my gluten free diet. At first i noticed a few changes:

I had more energy

My D stopped (this was a big deal because it was almost a daily occurance)

My numbness went away

My knee pain is non existant (i have hand problems with my knees for a very long time)

But... Several things that i hoped would go away remained, and have gotten (to a degree) worse. I still have pain in my abdomen (i actually went to the ER for this this morning, everything was fine they gave me some antinasua pills and pain pills and told me to keep an eye on it ), and my heartburn /indigestion/whatever the heck it is.

I went to the GI doctor on wednesday, but that morning i was vomiting and had D really really bad. He doesn't nessisarily think i have Celiac based off of my symptoms (although he admitted that most of them lined up), as, according to him my nausia was not related (when i'm in pain i sometimes get nausious). I have an endo scheduled for tuesday and he was going to look over everything closely, because he believes something is going on, but isn't for sure what. He was slightly annoyed that my doctor had told me to go on a gluten free diet already but, according to him, the damage would still be somewhat visable. He also told me i could take pepto bismol for my indigestion (which i started doing it).

The pepto i only take once aday before bed, i make due the rest of the time. If i don't take it, i can't sleep and feel like i can't breath and such, not fun at all .

I also have been having C really bad, despite eating numerous veggies during the day, it finally let up today (thank god). I don't think the pepto i've been taking has helped that at all lol.

My sleeping habits have changed, i'm either up all night or i crash and sleep for 12 hours straight.

My energy has went downhill since my abdomen started hurting to where i can barely get things done around the house (for example i had to bathe and brush my toy poodle yesterday and that wore me out). I can barely move about without pain, though it helps it some if i walk on a flat surface and slowly.

I have next to no apitite and i want to eat, but its hard (if that makes any sense). So that isn't helping probably.

I thought it might have something to do with my diet so i cut things out (like dairy) for a while then restarted it (slowly) a few days later, no change whatsoever.

I have also been having gas really bad, which after cutting out my bread (made with that one really good bread mix (the one that tastes beany if that helps)), it seemed to help a little, but alas it is still there.

I've also noticed with my chest indigestion/whatever it is, when its really bad i get cotten mouth and have (i wouldn't say difficult, because i can still do it if i drink water or whatever) swallowing.

I'm just so fed up at this point. I have a hard time relaxing and have retreated to a recliner (a big plush one) or else i am in bed propped up I'm so sick of this and am hoping when i go for the endo on tuesday, it will show something that he can treat or whatever

Any advice would be appriciated at this point in time.

[MissBonnie]

im 3 months gluten free and still i almost went to the ER in pain the other night. it was on sunday so i thought no point waiting up there all night. believe me i know how frustrating it all is. you just need to push through, find medication for the pain and nausea that works, and get as many tests in the mean time as you can to make sure you arent missing something bigger. but yes the healing phase is hectic! it hurts, its up and down, its emotional and scary. but one day we will be healthy even though we cant see it now!

[RobynMetz]

So sorry to hear that you are experiencing so many problems! I can relate to many of the symptoms you describe. I have been gluten free for 2 1/2 months after being sick for 24 years and am feeling better every day! Have you tried taking probiotics and an L-glutamine supplement? These are both over the counter items found at natural health stores and they are helping me with some of the symptoms you are describing. I take a high potency refrigerated probiotic and a powdered L-glutamine product; both are a bit pricey but they work. I mix the L-glutamine with a little applesauce because it tastes horrible and is really gritty but it is fantastic in repairing the damage to the villi in your intestinal walls. I don't think that either one would interfere with anything your GI doctor is doing but it would be a good idea to call and check before beginning anything new or ask him/her when you go in on Tuesday. Also, I have had fantastic luck with my naturopathic doctor (ND) in finding relief for my celiac symptoms. ND's tend to spend a little more time with their patients than MD's! I also have found that I react very horribly to corn. Have you tried food elimination? Another thing you can check with your doc on. Good Luck on Tuesday!

[ravenwoodglass]

It can take quite a while to feel consisitently better and only a month in you also may still be going through a bit of withdrawl. That and still healing can make us feel tired so if you are fatiqued rest for now.

You didn't mention the name of the bread but since you mentioned it tasted 'beany' does it have a bean or pea protein or flour in it? I found quite early on that my body really doesn't like bean flour, lupine flour or pea protein. That may not be the case for you but if your having problems with it dropping it for a bit is the thing to do. I go with breads that are mostly tapioca and rice flour. Although some of us do have issues with those also as everyone is different.

I am assuming you used new utensils and pans for the bread you made. Your old mixer and baking pans could be an issue gluten wise.

Since you have been gluten-free for a month or so do not expect the biopsy to show celiac. Be prepared for a false negative on that. If the diet is helping continue to stick with it as it does take time to heal. Some good high potency gluten free vitamins may help with the energy levels and weakness and adding in a sublingual B12 is not a bad idea.

I hope you are feeling better soon.

[Darn210]

Speaking from experience, my heartburn took a couple of months to resolve itself even on prescription meds (of course, I let it get really bad before I sought medical help). Propping the head of my bed up a couple of inches helped quite a bit.

[maximoo]

i don't have much to add except perhaps is to keep a food diary and record your reactions. And like raven said be vigilent about cross contamination. I hear cc can happen so easily & in so many ways. Hoping you feel better!

[dilettantesteph]

You could try to eliminate all processed foods. Eat only produce and meat and see if that helps.

[CarolinaKip]

You could try to eliminate all processed foods. Eat only produce and meat and see if that helps.

I do this and it has helped me. I had to figure out what fruits I could eat that don't bother me as well. Corn and soy make me hurt and bloat. It wasn't until rescently that I had a pain free day. Everyone is different, but think your intestines are damaged. It will take time to heal and digest food well again. Hang in there! Keep a food diary and add one new food at a time.

[shadowicewolf]

Thank you everyone, it helps (even in a small way) to see that i'm not alone.

For the life of me i can't remember the bread (redmill?), maybe.

I'll try your suggestions thank you.

[eatmeat4good]

My stomach hurt really bad the first few months I was healing.

I attributed it to growing baby villi.

The mental picture helped...I knew it was healing but the rumbling and pain were crazy. I was only eating meat and produce at the time so it wasn't glutening (I get other symptoms with that. I just wanted you to know that yes, the healing process is up and down, and other food intolerances rear their ugly heads...and in the end I went grain free and I am doing great...8 months in. Good luck.

[chasbari]

You could try to eliminate all processed foods. Eat only produce and meat and see if that helps.

I heartily second this suggestion. It wasn't until I did this that I went from "not really feeling worse by the day" to "actually feeling better by the day."

[Marilyn R]

I hope you have a better night tonight and a good day tomorrow.

For the constipation, heat 2-4 oz. of prune juice in the microwave for 30-60 seconds. Drink it warm. Follow that with a tsp of honey.

Soak in a hot bath with a couple of drops of peppermint oil, 2 cups epson salts and 1 cup of baking soda.

Take a walk. It doesn't have to be a long one.

I totally comprehend the not wanting to eat issue.

And the corn, soy and dairy zap me to. The evil quartet.

I hope you figure out what's zapping you, and that you'll feel better.

[jemms]

It dont know if you are on dairy but if so, I would eliminate it completely as well as casein. Good Luck!!!