Need Advice

[Wonka]

Hi everyone,

I'll give you a bit of background first. Ten years ago, my body fell apart (joint/muscle pain, chronic sciatica, fatigue) and I was diagnosed with fibromyalgia (well the diagnosis took about 5 years to happen). Upon reading about fibromyalgia I decided to do an elimination diet to see if any foods were a problem (according to everything I read many people with FM have food issues). What I learned from this is that gluten was a big problem (within a week of going, what I thought was, gluten free, my energy level improved and my pain reduced by about 50%).

Jump ahead 4 years and I meet a woman with Celiac Disease who suggested that I might just have it. Of course, I had muddied the waters by already being gluten free (or so i thought). My first ttg was negative (no surprise, I was gluten free). As I read more I decided that I needed to do a challenge and be retested. Man did I get sick. All tests still negative, but then they don't really know how long of a challenge is really needed before damage is detected (did I mention that I am also IgA deficient so the blood test will always be negative for me and the IgG test isn't available here in Canada - what's with that?).

I now know that I have Celiac Disease because my symptoms point in that direction and one of my daughters has been diagnosed. When I am not having my current issues, all of my fibromyalgia symptoms were gone too.

One year ago, I went gluten free, but my house has remained mixed. I suspect that I am getting cross contamination that has caused me to have leaky gut (I am going to a Naturopathic doctor on the 20th to help me figure all this out). I react to everything. I get nausea from drinking water. Everytime I eat my symptoms go crazy (vertigo, migraines, high anxiety {I'm usually a pretty even person}, bloating, gas, rotating diarrhea or constipation, cry jags, weakness, muscle and joint pain, I feel like I'm losing my mind).

The only foods I am eating, OK I only started this yesterday, are turkey , lamb, rice and sweet potatoes (no seasonings at all). Previous to this I had eliminated all gluten, dairy, soy (I had to go off a few meds for this one and change many of my supplement {which I'm having trouble taking as well right now}), all other legumes and all the nightshade vegetables.

Does anyone have any suggestions of foods that I can eat that will not irritate my gut?

I have coped well until now. I am finding this very overwhelming.

Thanks in advance for any advice.

[jerseyangel]

This is probably a longshot, but I will mention it because I, too, had my symptoms come back a few months after going gluten-free. I cut dairy, soy, legumes, coconut and tapioca--after each of these were eliminated I felt better for a while and then sick again.

I knew it was something I was consuming, but was totally and utterly baffled. About 2 years ago by chance, we were out of town for a long weekend visiting family. I picked up some spring water on the way and drank from that over the weekend. My stomach was so "touchy" that I didn't want to chance the water there making me sick.

I found myself feeling better, so I started investigaing why (something that by this time I'd gotten pretty good at) and realized that the latest return of my symptoms coinsided with the purchase of a new refrigerator with a water filter.

I did some research and with the help of another member here (thanks again Andrea!) I found out that most water filters use coconut hulls. I knew how ill coconut made me, so this made sense!

I immediately switched to spring water and the difference was dramatic! When you said that water makes you nauseous I had to relate this to you. I don't know your water situation, and like I said, this is a longshot but even bottled waters are sometimes just filtered water.

Surprisingly, I'm not the only one who feels markedly better on spring water. Another member here found that this helped her son.

All this said though, a good GI will try and help you unravel all this. There are conditions that can occur along with Celiac, so it is definately worth persuing.

[Wonka]

We have quite nice water here but even then I still put it through my brita. I did tell my husband and kids that this house is going completely gluten free and, to my surprise, there was no complaining. I guess seeing me this sick and non-functional has then willing to do what ever it takes to help me get better.

Now to find the energy to clean all the gluten out of my house.

[jerseyangel]

I hope you find that answer soon and are able to get to the bottom of this.

If your water is nice, why not try to go without the Brita for a few days just to see if it makes a difference? Honestly, I am not one to butt in after I've given my opinion but what if it's the actual filter that is bothering you? Brita filtered water makes me incredibly nauseous.

I wouldn't have believed it myself if it hadn't happened to me. I just hate to see someone this sick and I had to come back and mention it again. I'm sorry, I truly don't mean to be a pest and I won't mention it again.

[YoloGx]

Hi everyone,

I'll give you a bit of background first. Ten years ago, my body fell apart (joint/muscle pain, chronic sciatica, fatigue) and I was diagnosed with fibromyalgia (well the diagnosis took about 5 years to happen). Upon reading about fibromyalgia I decided to do an elimination diet to see if any foods were a problem (according to everything I read many people with FM have food issues). What I learned from this is that gluten was a big problem (within a week of going, what I thought was, gluten free, my energy level improved and my pain reduced by about 50%).

Jump ahead 4 years and I meet a woman with Celiac Disease who suggested that I might just have it. Of course, I had muddied the waters by already being gluten free (or so i thought). My first ttg was negative (no surprise, I was gluten free). As I read more I decided that I needed to do a challenge and be retested. Man did I get sick. All tests still negative, but then they don't really know how long of a challenge is really needed before damage is detected (did I mention that I am also IgA deficient so the blood test will always be negative for me and the IgG test isn't available here in Canada - what's with that?).

I now know that I have Celiac Disease because my symptoms point in that direction and one of my daughters has been diagnosed. When I am not having my current issues, all of my fibromyalgia symptoms were gone too.

One year ago, I went gluten free, but my house has remained mixed. I suspect that I am getting cross contamination that has caused me to have leaky gut (I am going to a Naturopathic doctor on the 20th to help me figure all this out). I react to everything. I get nausea from drinking water. Everytime I eat my symptoms go crazy (vertigo, migraines, high anxiety {I'm usually a pretty even person}, bloating, gas, rotating diarrhea or constipation, cry jags, weakness, muscle and joint pain, I feel like I'm losing my mind).

The only foods I am eating, OK I only started this yesterday, are turkey , lamb, rice and sweet potatoes (no seasonings at all). Previous to this I had eliminated all gluten, dairy, soy (I had to go off a few meds for this one and change many of my supplement {which I'm having trouble taking as well right now}), all other legumes and all the nightshade vegetables.

Does anyone have any suggestions of foods that I can eat that will not irritate my gut?

I have coped well until now. I am finding this very overwhelming.

Thanks in advance for any advice.

It seems to me your intestines are in bad shape thus causing you to react to seemingly everything.

I suggest you use slippery elm between meals to calm down and heal your stomach and intestines. You can make a gruel with it by mixing it one to two tablespoons to one to two cups of water. Start with a small amount of water and then increase as you whisk it in or use an egg beater (gluten-free of course). If bad enough, some people need to just use this gruel as a food for a while to give their system a chance to recover. You can take marshmallow root caps with your meals which will also help soothe your stomach and intestines.

Dandelion root caps (or plain cooked up root) and/or milk thistle caps will help you deal with the toxicity of rampant undigested proteins getting through your intestinal walls. Yellow Dock or Oregon Grape root also helps heal the intestines plus act systemically. Avoid all alcohol tinctures since they are usually gluten grain based. Use caps or boil up your own roots for 20 to thirty miniutes.

The enzymes Bromelain/papain should be taken both with meals to help with digestion and between meals for reducing inflammation. Pancreatin caps are good with meals especially meals that have protein.

You may or may not do well with HCL with meals. Some need it since their stomach doesn't produce enough stomach acid. Whereas many here don't have that problem (including me, though my ex-boy friend does need it as does my brother with celiac and Down's). If it burns afterward its not needed or you are taking too much.

Meanwhile avoid all uncooked vegetables and spicy anything. Meanwhile it sounds like you are on the right track though I think chicken is a little more tolerable to most than turkey. You might need to alternate your diet in order not to get sensitized and allergic to what you eat regularly. I would suggest trying other root vegetables to see what might agree with you. For now avoid potato at first however since many here are sensitive to it. For myself I am also allergic to carrots!

If you just go on the slippery elm gruel for say a week or two then you could slowly introduce various "safe" foods and see what agrees and what doesn't. Just add one food every two days or so. Keep a journal. Taking you pulse after eating and then an hour or two later helps give you even more info.

When you are better you can investigate alternative grains. If you use quinoa for instance, make sure you rinse it well until the water runs clear. Ditto with brown rice before cooking. I personally like Teff quite a lot as a grain as well as amaranth and some sorghum flour. But that's probably for later.

I also agree that getting all trace glutens out of your house should be a priority. Maybe you can enlist someone to help?

Hope the above herbal advice etc. helps. Good luck!

Bea

[Cinnamon]

Yes, I second the slippery elm! I remember several months ago having the same thing, and then reading a post from Yolo talking about slippery elm, and tried it. It really helped! It really has a soothing effect on your intestines. And do try going without the Brita. It could be the coconut, many people can't tolerate coconut. Do the kids have hamsters or parakeets? Their food usually contains wheat. That's something that I hadn't thought of until recently. Don't worry, we will help you figure this out!

[mftnchn]

Wonka,

So sorry for all of this trouble. Sounds like you were about 50% on gluten-free but never fully better?

I think taking the step to try to eliminate any CC and rechecking your food and personal care items makes a lot of sense. About the water, I use reverse osmosis.

Other thoughts I have are:

-be sure you have eliminated possible lyme disease. It is a strong cause of FM, and also mimics celiac. (check the thread on this forum)

-ask your ND if he/she can check your stool for bad bacteria or other parasite infections

-ask as well if they can check food residues to see if you have malabsorption and what you are not absorbing.

Villi damage can mean that you don't break down carbs well (three enzymes are produced in the villi that I have read about). This was a big answer for me when I found this out--I was excreting a lot of sugar in stool which shouldn't happen. My MD put me on the specific carbohydrate diet and it has made a big difference.

Re: diet, that is my recommendation, that you look into the SCD. It is designed for people who have a lot of digestive problems, so the foods are introduced gradually according to what a person tolerates and according to how easy to digest the foods are. On the intro, you might experience a lot of symptoms as the bad bacteria die off. Then using probiotics to replace these with the good guys is also very key.

Hope you are better soon!

[Wonka]

I asked for advice and you are giving it. You are not being a pest. I appreciate the time you are taking to share. I will try drinking my water unfiltered and see if I have the nausea subsided. I'm willing to try anything to get better (or almost anything).

[Wonka]

OK, two of you saying to try slippery elm. I guess I will have to try that one. I do take digestive enzymes before eating and I take L-Glutamine at night with my magnesium. I haven't been able to take my iron (I have been upgraded from iron deficiency anemia to iron deficiency but still need to take it but boy it's harsh right now), or my multivitamins. I have been taking Culturelle Probiotics (just looked I only have a week left, I guess I have a few things to pick up now).

Thankyou everyone for your advice and warm wishes. I have felt pretty let down by the mainstream medical community, I'm cautiously optomistic about this new Naturopathic doctor that I'm going to be seeing but in the mean time I really appreciate all the advice from those that have been where I'm at. Thankyou.

[Wonka]

I have been thinking that I needed to follow that diet and buy the book. There is a second hand book store (actually two) within walking distance to my house so I'll check those out and see if I can find it on the cheap.

[jerseyangel]

One more thought since you're not mad at me

Some people have a lot of trouble with probiotics. They're one of those things that some swear by, but others--especially those who are sensitive to dairy--can't tolerate.

Culturelle made me ill--again, nausea. Did you notice feeling any different within a few days of beginning it? I was fine for a few days but then got so sick I had to stop taking it. I notice you have pared down to basic foods, which is a good idea--it might be adventagous to do the same with your suppliments just for a week or so to see if any of them are a problem.

This elimination approach is a pain, but very accurate. Sometimes it takes a while to ferret out what doesn't agree with you. Sounds to me like it's most likely something you consume often--or daily.

[Wonka]

Boy this sure is overwhelming.

Yes I have paired down my supplements. I've stopped taking my iron, Vit D, Multivitamin, probiotics, antihistimine (and boy am I itchy) and digestive enzymes in the last few days (just to give my gut a break). I have continued to take my magnesium (I need this or the constipation becomes unbearable), L-Glutamine and Trazadone (50mg for sleep).

I guess I just need to be patient (I've been sick for 10 years and I'm having trouble finding my patience at the moment, I'm not so easy to live with right now).

Thanks for troubleshooting with me.

[NorthernElf]

Hi,

I live in a mixed household as well - and with 5 of us living here, that isn't going to change as I am the only gluten-free person. When I get glutened and don't know where it is coming from, I start to think dairy or soy or whatever is also an issue...but usually it is a unknown gluten source (CC) that is getting me, although I do think dairy is an issue for me as well.

Some precautions I take...

-a dedicated gluten free counter in the kitchen.

-my own different water glass and coffee mug no one else's gluteny lips touch !

-my own colander, muffin tins, cookies sheets, measuring cups, etc.

-squeeze bottle condiments (no double dipping gluteny knives).

-a stash of gluten free items in a gluten-free cupboard, and gluten free baked goods in small bags in the freezer.

-my own toaster

-use only the metal bowls for mixing (plastic holds gluten)

-when travelling, use only my water bottle (the kids use theirs, no borrowing!)

-carry my small lunch bag everywhere so I don't eat something possibly unsafe out of hunger

-don't share plastic storage containers for lunches as they probably are glutened

When I screw up - pepto bismal helps, advil is better than tylenol for the really bad headaches/aches, and a sinus pill often helps too, as does rest and a light diet.

I think cross contamination is cummulative - sometimes I can get away with just a little bit (say using a common knife by accident), other times I can't. When I can't I think it's because I've probably already been getting little bits here & there and it sorta adds up and gets me. I do pretty good though - haven't had a bad glutening in a while....kinda scares me because that's when I forget & do something stupid and really get myself !

[Wonka]

Good suggestions and I try to do most of them but my kitchen is really really small (these old houses just didn't appreciate the need for space in a kitchen). After reading you list I can think of a few places that I may be getting cc'd. All leftovers (mostly gluten-free) are stored in plastic but I had not separated out what was for gluten-free and what was for the gluten foods. The gluteny food that my husband and kids cook is usually pasta or perogies which stick to the plates, pans etc... Although I ask them to give the dishes a light scrub, none of them (including my husband) ever do it and all that gluten gets circulated throughout the dishwasher.

Yesterday I placed my keyboard upside down and shook it. I could not believe the amount of cracker/gluten crumbs that came out of it. There is a rule that NO food of any type is allowed to be consumed in the computer room yet I've caught them all on numerous occasions sneaking food in here. So now I have cleaned my keyboard and none of them are allowed to use my computer (a natural consequence I think).

I think, because my family only thinks they get this, that the only smart course of action, for this house, is for it to be a gluten free zone.

[jerseyangel]

Don't forget your dish cloths, sponges and kitchen towels. You should keep yours separate

[dilettantesteph]

Bananas and watermelon are easy on the stomach.

[YoloGx]

Bananas and watermelon are easy on the stomach.

That depends on whether or not you have candida and/or fungal overgrowth and possible allergy to fructose. I do, so those things don't work for me.

That's hard Elf that you have to share in a household with so many who eat gluten. Is this your house with your kids etc.? Seems to me you might be able to get your family to eat more non glutenous food in deference to you and have them eat gluten outside the house or in the garage or whatever... Eating without gluten once you get used to it can be very tasty plus its better in many ways actually for everyone since no one is able to fully digest gluten from what I understand. It must be nerve wracking to always wonder if you are safe or not...

Bea

[Wonka]

Don't forget your dish cloths, sponges and kitchen towels. You should keep yours separate

I try. I must replace dishcloths around 3 times a day (everytime I see the gluten cloths lying on top of mine), reminding my family is a lesson in futility. I'm starting the gluten donation box today, I want everything that can make me sick out of this house ASAP.

[aliciatakescare]

Hello everyone,

I am new to this myself, having only been diagnosed in February this year. I had been hospitalized with intractable nausea, vomiting, diarrhea and severe pain 3 times in a week. My boyfriend (lives in Minneapolis) was watching an episode of the TV show House where a patient had the same symptoms and was diagnosed with Celiac Disease, called me on my way to the doctor -- that is when the testing/gluten challenge options were suggested by my doctor - we decided to go with Gluten Free diet for 7 days and recheck at which time I was diagnosed. After being diagnosed with celiac disease and going gluten free, many of my chronic health issues have resolved or improved -- amazing how much of your body's health is linked to what you eat/drink. Hang in there and know that you are not alone. I too live in a mixed household. I am a single mother of 3 teenagers: 14-year-old daughter on the verge of anorexia, 15-year-old son with a traumatic brain injury and many other medical issues who cannot eat red dyes, caffiene, strawberries or refried beans and a 17-year-old son with allergies to nuts (all kinds).

I have been getting cross contamination and could not figure out why/how. Thank you for the list of precautions listed below - I had never thought of any of that. I have been ill since yesterday noon when we ate - this shed some light on where the cross contamination could have come from. Any amount of gluten, no matter how miniscule, I get shortness of breath, anxiety, severe pain allover, nausea, vomiting, diarrhea, cramps, migraines and major muscle spasms allover. There have even been times when I have felt like I was going literally insane and it was all in my head, but then I do have the medical proof and correlation. How do you get over that feeling that creeps in? Does it ever get better? I have found a few really good gluten free products out there and some that I know are acquired tastes as well as some really yucky tasting foods.

I live in a very small town in northwest Iowa and looking for support and understanding as well as advice on how to cope and any suggestions on Gluten Free foods that taste good with good texture.

Hi everyone,

I'll give you a bit of background first. Ten years ago, my body fell apart (joint/muscle pain, chronic sciatica, fatigue) and I was diagnosed with fibromyalgia (well the diagnosis took about 5 years to happen). Upon reading about fibromyalgia I decided to do an elimination diet to see if any foods were a problem (according to everything I read many people with FM have food issues). What I learned from this is that gluten was a big problem (within a week of going, what I thought was, gluten free, my energy level improved and my pain reduced by about 50%).

Jump ahead 4 years and I meet a woman with Celiac Disease who suggested that I might just have it. Of course, I had muddied the waters by already being gluten free (or so i thought). My first ttg was negative (no surprise, I was gluten free). As I read more I decided that I needed to do a challenge and be retested. Man did I get sick. All tests still negative, but then they don't really know how long of a challenge is really needed before damage is detected (did I mention that I am also IgA deficient so the blood test will always be negative for me and the IgG test isn't available here in Canada - what's with that?).

I now know that I have Celiac Disease because my symptoms point in that direction and one of my daughters has been diagnosed. When I am not having my current issues, all of my fibromyalgia symptoms were gone too.

One year ago, I went gluten free, but my house has remained mixed. I suspect that I am getting cross contamination that has caused me to have leaky gut (I am going to a Naturopathic doctor on the 20th to help me figure all this out). I react to everything. I get nausea from drinking water. Everytime I eat my symptoms go crazy (vertigo, migraines, high anxiety {I'm usually a pretty even person}, bloating, gas, rotating diarrhea or constipation, cry jags, weakness, muscle and joint pain, I feel like I'm losing my mind).

The only foods I am eating, OK I only started this yesterday, are turkey , lamb, rice and sweet potatoes (no seasonings at all). Previous to this I had eliminated all gluten, dairy, soy (I had to go off a few meds for this one and change many of my supplement {which I'm having trouble taking as well right now}), all other legumes and all the nightshade vegetables.

Does anyone have any suggestions of foods that I can eat that will not irritate my gut?

I have coped well until now. I am finding this very overwhelming.

Thanks in advance for any advice.

[Wonka]

Today we turned my house into a gluten free zone. I really think it is the only way to go for us. It may be the only way to go for you as well. Once you have figured out how to supply really good gluten free food to your family, it will be much easier.

I cook mostly from scratch (but then I always have). It is easy to convert alot of recipes to gluten free. If the recipe calls for dredging in flour use a gluten free version (sweet rice flour or cornstarch are good choices). Want to bread something, use gluten-free bread crumbs or gluten-free corn flake crumbs.

If you have trouble finding ingredients, mail order them. I make up my own gluten free baking mixes but if all the flours are not available or you don't think it would be economical to order them just buy a good basic mix (like Pamela's). Most recipes that call for lots of different flours, still work if you substitute a mix in equal proportions to the amount of flours requested.

I have figured out how to make my mixes from this website Open Original Shared Link .

I have recently been making gluten free flat breads for sandwich making (even my kids that don't need to be gluten free like them) from the Gluten Free Gobsmacked site. I like her Sundried Tomato wrap Open Original Shared Link and her Mock Lavash recipe Open Original Shared Link . These flat breads can be thrown together in 5 to 10 minutes, straight into the oven for 12-16 minutes, 10 minutes to cool and you are good to go. I've been happy with many of her recipes. Take a look at the site.

You sound like you have alot on your plate. All of this will get easier (at least that is what I keep telling myself, lol) especially when you can resolve the cross contamination issues.

Check out the baking section of this site. Lots of good recipes to be found there and many willing helpers to get you started cooking gluten free.

Good luck.