Eclara

Thank you all! I have finally come to terms with the fact that I will never have a conclusive diagnosis and am trying to settle under the umbrella of gluten intolerant. I have started weaning myself off the Prilosec, and after a rough first week my stomach is feeling much better than it has in a long time! I have also been doing pretty well with avoiding contaminated spaces, I'm still very paranoid about it but I feel that I'm doing the best I can with what I've got to work with. At any rate, I was able to add back in rice cakes and have been experimenting with gluten free oats and breads with okay results. I've also started taking digestive enzymes and a bunch of vitamins, and my fibro has gotten good enough that I have been able to take my dog out for 20-30 minute walks every day this week! It was a pretty quick turnaround, I think the Prilosec was holding me back.

Of course now my lower stomach is acting up and I'm not sure why. I have been having constipation, stomach pain/pressure and truly awful gas for the past four weeks or so. I live in constant terror that it will act up while I'm at an appointment or with other people! I would blame the rice cakes but I don't think I've been eating them that long, although the timeline's a bit fuzzy. I initially thought it was from adding avocado to my diet, but I haven't touched the stuff since mid-April. Then I suspected aloe vera juice was the culprit, but that seems to be a no-go as well.

Also, I have noticed that since I added the grains in I am more prone to binges. As I've mentioned before I seem to swing between binge eating and severe undereating, and I'm starting to wonder if it's not all psychological. I've found that I've been having very strong binge compulsions like I haven't had since last summer. I have also been getting very intense, detailed food cravings at the drop of a hat- they can be set off by a word, a sound, a picture, a smell. Once it's in my head it's like I can taste it and feel it and smell it and it's the absolute worst. It's usually sugary, carby kinds of foods. I had the same food cravings when I was 'detoxing' from grains in the beginning, and I don't know if they're temporary but they definitely don't help with the binge compulsions.

I've also been having odd depressive mood swings. I completely shut down for about four days, scared my Mom half to death. It hit so suddenly, it was kind of alarming. I had just started eating Udi's hamburger buns and oddly the sudden depression lasted four days, just long enough for me to have a bun each day. The day after I stopped eating them, my mood improved. It was very strange. There was nothing happening in my life that should have caused it psychologically, if anything my life has been improving. Could it be related or is that crazytalk?

I suppose I should probably cut out all the grains again and see what happens, but it's going to be really difficult to overcome the cravings for them. Especially now that I was able to add back mustard and found out that my favorite lunch meat was gluten-free! ):

Edit: Oh man, now my fibro is flaring again. I really thought I was done with that! Dang.

Thank you all for the replies!

I probably should have clarified more. I got a bit swept up in my pity party rant and kind of forgot what question I was even asking, apologies! I am eating gluten-free now, not lite, and have been since early February. I cook and prepare all my own food, have my own pots and pans and a tiny cupboard for my gluten free things. The issue is that my family is really, really messy. Like, there are breadcrumbs in the silverware drawer and stuck to the kitchen sink and strewn across the counter and they seem to reappear like magic a few times a day. I feel too exhausted to clean everything three times a day just so I can make food safely.  I rinse off plates and silverware before I use them and I prepare everything on top of plates and up off the counter but I am just not sure if it's enough. Especially when I take into account the amount of times I touch buttons and handles and mistakenly use their dish towels, etc. Someone else suggested to me a makeshift kitchen in my room but I do most of my cooking on the stove and in the oven. I'm very confused about how to tell if I'm doing a good enough job with the gluten when I feel terrible constantly, or how I can possibly tell if there's something else entirely that's currently bothering me.

I think the bigger issue now is that my gastritis pain is really very bad and limits my food really severely. Grains, almost all fruits, red meats, raw vegetables, dairy, processed foods, and high fat things like nuts flare the gastritis. I also have lower intestinal issues with legumes, eggs, soy and I believe fructose. I have to play a balance game of trying to placate my gastritis and avoid my intolerances and it is very difficult. Most days I just end up eating two or three bananas, a few pieces of plain chicken and maybe some steamed spinach or cooked carrots. Occasionally I'll have some squash or a small handful of blueberries. But that's the entire day every day and there's no way I'm getting anywhere near the amount of calories I should be. I don't think my body can heal when it's so undernourished, but I don't know how to work around all the obstacles.

My GP keeps trying to push more PPI's on me but I've been on Prilosec for 6 weeks already and I'm not really comfortable with continuing to take them so long past the recommended period, much less in excessive doses. I haven't noticed a difference with them either way.

I am talking to someone weekly about the eating disorder, and we have it pretty well under control, but I think it's risky for me to have to stay in this pattern of undereating. I guess I still don't know what my question is. I think I'm just starting to worry that the gastritis won't heal up, especially because I can't figure out what to do for it next.

Thank you all for the replies! I will definitely mention gastroparesis and cystic fibrosis when I visit the doctor next, but I'm not sure the symptoms fit me quite right after reading about them. I'm thinking now that a lot of my problems are actually coming from the gastritis which is refusing to heal. I've been on Prilosec for 5 weeks now. For some reason, the gastritis hates foods high in fat and really wants me to eat things full of carbs, but the only things I seem to be able to eat are higher in fat. My stomach has not tolerated grains or potatoes since I did the gluten challenge in December and the only fruit it will tolerate is bananas. I have been eating 3-4 bananas a day and squash on occasion to try to get some carbs in but it's just not cutting it. I am literally eating only bananas, lean chicken and turkey, cooked spinach, small servings of avocado, occasional squash, carrots and a handful of nuts when I feel like I'm dying. My stomach is generally at least manageable when I eat only this, but as soon as I try to add in anything else the pain flares back up. I have lost 10 pounds and I'm constantly exhausted, and I'm feeling very depressed and lost. I don't know what to do, my gastro brushed me off last time I went in and my GP has told me to rely on the Prilosec for now. I can't get in to see another gastro without a referral from my GP, who will just tell me to wait it out. My mom is all caught up in the idea of doing the celiac gene and food reactivity tests from Enterolab, but I'm not sure what that will even help at this point because I'm already avoiding gluten like the plague and I'm not sure what else I could possibly be reacting to with such a small selection of food, if I'm reacting to anything at all. I just wish I knew why the gastritis isn't healing.

I feel the same way, but I have Gastroparesis so the softer/less food I eat, the better I feel. I didn't see you say anything about bloating, nausea or constipation though. I does also give me stomach pain and leg cramps if I can't go to the bathroom. I hope you can get an answer!

Yes, I struggle a lot with nausea and constipation and mild bloating, I probably should have mentioned that from the get go! The nausea is a new one for me, it only started happening when I developed the gastritis (December), but the constipation has been lifelong with occasional periods of regularity and the bloating goes back a few years. Thank you for your reply!

Lower right quadrant could be your colon.

 

Have you tried a probiotic?

 

Keep in mind some food triggers can cause damage for 12 days, before healing process time.  I think it is in your best interest to keep a food journal.

Yeah I've tried several probiotics over the past few years, but I never noticed any difference from them. I had a colonoscopy/endoscopy and a full abdominal and pelvic CT in December and January and they couldn't find anything really wrong with me apart from mild gastritis.

I will try the food journal, but it seems like it's a pretty consistent discomfort that occurs no matter what I eat, if I eat. I've done everything from Standard American Diet to vegetarian to gluten-free raw to FODMAP-free to SCD to living off chicken and bananas, and it's always been there. I can't think of many foods that would carry through all of those, yet it seems to be specifically related to eating! It's very confusing.