Lingering Problems, Don't Know What To Do!

[runnerkat]

So I went gluten free last summer and felt better for a while, but still had some unresolved issues. As time has gone by, I've found that soy was causing problems, so I stopped eating all soy products. Several weeks ago I tried to add dairy back in (because I was hoping that my lactose intolerance had been resolved), but I reacted to everything I tried with severe stomach pain and diarrhea, including lactose free products such as lactaid milk. So I'm thinking that casein is also a problem for me. Thus I am now gluten, casein, and soy free. And I feel mostly better, but there's still some lingering problems that I don't know what to make of! Every morning I have urgent (I go back and forth to the bathroom 3 or 4 times), loose stools (sorry if TMI) that float, are bulky, are kind of disintegrating, yellowish, have some undigested food in them (i.e. rice, pieces of carrots, grapefruit pulp, etc) and leave this weird residue floating on the surface. The good thing is that it does seem to regularly happen in the morning, so I don't have to worry about it during the rest of the day. Also, I have no appetite (and haven't since long before I was diagnosed as gluten intolerant), get leg cramps at night occasionally, have felt this weird numbness/tingling in my fingers sometimes, am usually freezing but sometimes get these weird night sweats, have amenorrhea, am underweight and can't gain, and sometimes I have trouble focusing and remembering things. I don't know what to make of it! Why can't things get back to normal and why can't I just feel good?!?!?

And I can't get in to see my doctor because I'm in college and she's booked all during my spring break. And then I'm also worried about nutrient deficiencies and don't know what to eat, especially because I'm a long distance runner for my college (and I love it!) and I'm a vegetarian, so with all my food intolerances, I feel at a loss as to what to eat!

Any help/advice/similar experiences anybody could share would be greatly appreciated! Why aren't my BMs going back to normal? Why is there still undigested food? Why am I never ever hungry?????? Please help

[ang1e0251]

Sounds to me like you are still ingesting something you're reacting to. It could be hidden gluten. Tell us a little more specifically what you are eating and drinking. Are you taking supplements? What are they?

I would take the sublingual B12 the methyl kind. That can help your overall feeling of well being, energy level, and some of the nerve sensations you're having. Once I started, I realized how much better I felt.

It might be tricky finding what's bothering you but be patient. Post what you can. There are many here who can sort out some tricky food issues.

[runnerkat]

Thank you for responding!! I'll do my best to tell you what I'm eating. It's pretty limited, since I've been trying to stay very safe in an effort to ensure that I'm not ingesting something that is making things worse. So the staples of my diet right now are:

-Fresh fruits and veggies (main ones are apples, oranges, bananas, grapefruits, sweet potatoes, broccoli, spinach, tomatoes, and snap peas)

-365 brand canned beans (pinto, kidney, chickpeas)

-Rice cakes (lundberg farms)

-Rice

-Quinoa flakes

-Quinoa

-Frozen fruit (365 brand)

-Enjoy life granola

-Good Neighbor hummus

-365 brand almonds

-Hol-Grain brown rice crackers

And then I take a calcium supplement and a multivitamin (Hannaford brand that says right on the bottle that it contains no gluten, dairy, soy, etc. etc.) My multivitamin does contain B12. Is that the same as a sublingual kind?

I had been eating some gluten-free cereals occasionally with almond milk, but I stopped that a couple weeks ago because I wasn't sure if they were bothering me. And even without that, nothing has gotten better. Any suggestions?

[mushroom]

Thank you for responding!! I'll do my best to tell you what I'm eating. It's pretty limited, since I've been trying to stay very safe in an effort to ensure that I'm not ingesting something that is making things worse. So the staples of my diet right now are:

-Fresh fruits and veggies (main ones are apples, oranges, bananas, grapefruits, sweet potatoes, broccoli, spinach, tomatoes, and snap peas)

-365 brand canned beans (pinto, kidney, chickpeas)

-Rice cakes (lundberg farms)

-Rice

-Quinoa flakes

-Quinoa

-Frozen fruit (365 brand)

-Enjoy life granola

-Good Neighbor hummus

-365 brand almonds

-Hol-Grain brown rice crackers

And then I take a calcium supplement and a multivitamin (Hannaford brand that says right on the bottle that it contains no gluten, dairy, soy, etc. etc.) My multivitamin does contain B12. Is that the same as a sublingual kind?

I had been eating some gluten-free cereals occasionally with almond milk, but I stopped that a couple weeks ago because I wasn't sure if they were bothering me. And even without that, nothing has gotten better. Any suggestions?

Some people find apple skins and the cruciferous vegetables like broccoli hard to digest, some have problems with quinoa (I have problems with spinach--it passes straight through).

I was having a similar problem last summer; part of it I think was cross-contamination from Dh's sourdough french bread, and the rest was that my pancreas was not putting out enough digestive enzymes. I would suggested a good enzyme supplement to see if this makes a difference; also eliminating the broccoli and apple skins. Be sure to chew your food thoroughly as digestion starts from the saliva in your mouth.

Good luck, and I hope some of these things help. Others will probably have additional ideas. By the way, the B12 in your supplements is not readily available to your body the way the sublinguals are.

[ang1e0251]

That's right, the B12 in your multi isn't available to you the same way as the sublingual methylcolobin (sp?) is. Take it in addition to your multi.

Doesn't look like your having dairy. That's good. I couldn't ingest fruits at all for almost a year. Now I can eat them again but in the beginning they just were too harsh for my damaged system.

I had some similar problems starting out like you and it was mainly that I was CCing myself in my own kitchen. Some of my spices had been CC'ed by sharing measuring spoons between containers. I was still drinking coffee which I found later was causing some neuro problems and I stupidly shared my toaster.

I just read a post on another website where she said she could not get well until she replaced most of her cookware. No matter how much she cleaned it, she was still reacting. Her health improved when she broke down and bought new. Are you cooking in pans and skillets and crockpots that have previously held gluten foods?

You didn't mention what you are drinking. One poster who was sensitive to coconut was sick again after buying a refridgerator with running water. After a vacation away from it, she felt well again. Come to find out the water filters for her new unit contained coconut! Even what you are drinking can affect your well being so look at that too.

I had to clean out my spices and recently found my cocoa powder is getting me too. I bought it at a bulk foods store where they sell all kinds of flours too. Out it goes!

Allergens are sneaky! We'll help you figure it out as best we can. You're a detective and need to solve your mystery.

[runnerkat]

Where can I get a sublingual B12? Just at a regular store? Should I consult my dr. before taking it or just go for it?

I'm pretty sure that I'm not CCing myself: I bought all new cooking utensils and pots/pans once I found out that I was gluten intolerant.

I don't drink anything but water (from the tap or refrigerator) and occasionally orange juice (tropicana).

The other thing that has been worrying me is that I've recently developed a severe back pain (in the last week) that hasn't been going away. It's in my mid back basically right under my ribs. It hurts when I try to twist my upper body around either direction or bend my back in a certain way and it also just tends to ache when I'm not doing anything. Sometimes it will send shooting pains throughout my back and into the front of my ribs. It hurts when I press on the area (it basically feels really tender and sore) It also hurts sometimes when I breathe (and is making it extremely painful to run because the jostling motion makes it hurt worse). I don't know what to make of it! Has anybody had a similar experience? Do you think I just pulled something without realizing it? I'm not sure if it is related at all, but it's starting to worry me because it's not getting better!

[ang1e0251]

The back pain is something different. It calls for a dr visit. Get in to see to it right away. It could be gall bladder, kidneys... any number of things.

The B12 I have to buy at my local health food store or on-line. Walmart has some but it's not the methyl kind. Ask your dr when you go about your pain.

[4wildberries]

Perhaps quinoa is not agreeing with you? I realized that when I eat it---it comes out pretty much the way it went in Your symptoms really do suggest some sort of continuing ingestion of gluten. Have you checked shampoo, lotions, lipsticks/balms, etc.?

Good luck---I feel your pain!

[Janessa]

since you are having problems with soy you could also be reacting to other beans as well since they are related. Rice and corn are related to wheat and I have problems with those as well (I can eat some rice with no problems but not everyday)

I am vegetarian as well and it does get very difficult at times when you feel like you have nothing to eat

Try goat milk/ cheese it has a very low casein content and can be tolerated better than cow dairy, it you can do tapioca try Chebe rolls (I make without cheese) they are very good and grain free. One of my favorites is pizza crust made with Chebe topped with tons of fresh veggies and crumbled goat cheese on top, yummy!

I get bad pains in my sidesand back from eating soy and beans, I get tingling numbness in my arms and hands from corn and rice and all give me brain fog and bad fatigue

[runnerkat]

so I went to the doctor yesterday (though not my normal dr - she's away all week, so I had to see another GP in her office, and I can't get an appointment with my gastro until august!) and it was far from helpful! She didn't know what to make of the digestive issues, didn't really know what my back pain could be from, and I left feeling like none of my questions were answered! Really the only thing she did was order blood tests for vitamin D, iron, and the B vitamins, to check my levels, which I guess is good, but I just feel like it's not really going to resolve my problems! My back is feeling slightly better now, but it's still just really sore in and around my rib cage area when I twist around, and I really don't think it's muscle related because it feels so much different! ugh - I wish there was just some easy answer to help solve all my problems!

[scissorhappygirl]

Hi. This is my first post and I am thrilled to be here! Runnercat, have you been kissing anyone? Have you changed your makeup, lotion, etc.? Also, I have the same pain in my back. I would see a Sports Medicine doctor if I were you. My sister is one, and she was the only person who found my problem. It took her ten seconds to figure it out, after years of me searching for answers.. My rib is basically dislocated. It is sometimes called a 'slipped rib' or a 'subluxated rib'. It causes pain in the back that radiates to the front. It's perfectly treatable with chiropractic and physical therapy, but I would check it out. A sports med doc will probably be able to figure out whatever it is even if it's not a slipped rib. But seriously that is what it sounds like. The longer it takes to diagnose, the longer it takes to fix it. You must see a specialist, because not many doctors are saavy to the deal, just like our disease!!!. And don't run until you get it checked. The motion caused by your chest muscles moving added to the fact that you're hitting the ground hard is double trouble. Ice it every 20 minutes when you get time.I hope you figure it all out!

[JodiC]

How were you diagnosed with Celiac? Fructose intolerance, SIBO, fungal infection, Intestinal flora imbalance, H pylori infection, Sjogrens, gallbladder issues...just to mention a few. Celiacs know what to eat and what to look for. I hate the word glutened! Just because you are feeling crappy doesn't mean you are glutened. Everything you are eating is 100 percent gluten free yet you are still having issues...hmmmmmm!

[her-never-ending-muse]

Here are the things I would double check (in bold).

-Enjoy life granola - Unless it says gluten-free (likely with enjoy life, but I'd double check) this likely contains oats. Oats are controversial but they make me react.

-365 brand almonds - Was it processed in a plant that processes wheat? (Yes even nuts are!)

-Rice cakes (lundberg farms) - Lundberg has gluten-free varieties, but be sure this one says gluten-free.

-Rice - Was it processed in a plant that processes wheat?

-Quinoa flakes - Was it processed in a plant that processes wheat?

-Quinoa - Was it processed in a plant that processes wheat?

-Good Neighbor hummus - Was it processed in a plant that processes wheat?

-Hol-Grain brown rice crackers - Was it processed in a plant that processes wheat?

"My multivitamin does contain B12. Is that the same as a sublingual kind?"

Sublingual means you put it under your tongue. This is useful for GI folk and Celiacs because our digestive systems become so irritated that we do not absorb enough vitamins through digestion. The underside of your tongue is a mucous membrane (as opposed to regular skin) and will absorb most substances put onto it. Therefore it is an alternative way to get vitamin B when your intestines are a mess. B vitamins are not inherently sublingual. Unless you bought a special supplement that specifically says it is sublingual it probably is not.

[Shanta]

It sound like you are malabsorbing you food, that would be the undigested floaties you are describing. There is a great food intolerance panel available through US Bioteck Laboratories that tests for about 90 foods and there is also a vegetarian panel that I would add to that. My kids were having some of these issues and this panel was a life saver. Our dr ordered it but it is more of a naturopathic test than one most MDs know about. Look it up on line and take all the info with you to your Dr's. It tests for IGG reactions from foods. Good Luck!

[runnerkat]

Thanks for all the responses! Scissorhappygirl - no I don't think it's anything wrong with my ribs. The pain has now migrated to the front under my rib cage as well and gets much worse after I eat, especially when I eat fat. I also have elevated liver enzymes, so they think something might be wrong with my liver or gall bladder. So now I'm getting an HIDA scan done a week from today. I hope they figure out what's wrong!

[beanpot]

I had that ribcage pain you are talking about only up in my chest area and it was very painful. I went to the doctor and he said it was interstital (sp?) muscle strain. Basically the muscles between my ribs had been strained. I was told to take ibuprofen and rest. For me it was from going up on my weights in the gym. It went away after two weeks, but unfortunately I haven't yet gone back to the gym!

[chatycady]

Thanks for all the responses! Scissorhappygirl - no I don't think it's anything wrong with my ribs. The pain has now migrated to the front under my rib cage as well and gets much worse after I eat, especially when I eat fat. I also have elevated liver enzymes, so they think something might be wrong with my liver or gall bladder. So now I'm getting an HIDA scan done a week from today. I hope they figure out what's wrong!

Your pain could be from an enlarged liver. I hope you are doing okay. Please post and tell us you are getting better!

[runnerkat]

Your pain could be from an enlarged liver. I hope you are doing okay. Please post and tell us you are getting better!

what could cause an enlarged liver? I have my HIDA scan next Monday, which can't seem to get here fast enough. The pain hasn't diminished any and it hurts to bend, twist, or be in a odd position for any period of time. Sleeping has started to be really painful, unless I lie flat on my back, but once I fall asleep, I move and then when I wake up I'm in lots of pain. Ugh - I hope the doctors can figure out what's wrong!!