FooGirlsMom

I want to ditto GlutenFreeManna. Prior to going gluten-free in October my joint & muscle pain was really awful. It hurt to get up from a chair and walk up stairs some days. The inflammation in my right hand was becoming painful all the time.

I had to not only go gluten-free, but also dairy & soy free. I also found corn causes inflammation. Soy is the worst, however. Everytime I have a bad flare up (it's not gone completely in just a couple of months yet but does improve) it's always because of one or more of the four offenders.

I hope you see improvement soon. Know how you feel.

FooGirlsMom

Felt I was dying

Gluten hateful unknown foe

Conquer equals hope

I'm in the same place you are. I have certain days where I seem to react to gluten free foods and it makes me think it's secondary allergies or something seeping via "leaky gut". Two things on your list cause me to react from time-to-time. One is gluten-free bread. Some days I'm peachy with Udi's bread & other days I seem to have an issue. Some tea seems to upset my stomach even if it's gluten-free. Tea is a plant so maybe you're having an allergic reaction?? You didn't say what kind of tea.

One really weird thing that tears up my stomach now is cooked onions (???) There is just no rhyme & reason and I am suspicious that if I've upset my stomach slightly with a food it doesn't really like -- like the previous 24 hours -- and then I add gluten-free bread on it (harder to digest) my body goes into a meltdown. Many days I tolerate Udi's bread just dandy. It's so odd.

Hope you figure it out. It's pretty frustrating isn't it?

FooGirlsMom

When your gluten intolerance isn't the typical GI issues it can easily get dismissed as something else. However, anytime you have a family member with Celiac or diagnosed gluten intolerance and you, yourself, have some sort of auto-immune issue that cannot be cured through conventional methods (and possibly only tolerated through pharmaceuticals) I'd be looking at the gluten-free diet as a possible cure.

People often think that just because they don't feel wonderfully better within a month of a gluten-free diet, that they are not gluten intolerant, esp. if they feel worse. Lots of us feel worse before we feel better. Reason? We have secondary food allergies, at least initially. For instance, I cannot eat soy, dairy or very much corn. If I do, I feel bad - irritable, indigestion, ill, etc. These things did not affect me before going Gluten Free. But when I eat "cleanly" and don't have cross-contamination issues, or react to secondary allergies, I feel amazing. It can take months to root out all your issues as you begin to heal.

Just my 2c worth

FooGirlsMom

There is so much misinformation, even in the medical community, about gluten intolerance. When I saw the statistic that even after the onset of severe symptoms it takes people an average of 4 years to get diagnosed I felt sick. So for all the people who have great doctors and find out right away, that makes 8 years for someone else. There are millions of us undiagnosed out there. And there is a growing number of people like myself who had to figure it out alone. I know there are a number here on this board.

We'll all pretty much tell you the same thing...the proof's in the pudding...so to speak. If you go on a gluten-free diet and your symptoms improve or go away...you have your answer. Who cares what a doctor says? They are there to help you. If they aren't helping, help yourself. If you sincerely believe it's Celiac, then use the medical community to support your efforts. Go for the vitamin deficiency testing, etc. You may need iron, vitamin B, etc. to support your recovery efforts. Seeing a knowledgeable nutritionist who works with Celiac patients can help you gain your weight back and maintain a healthy weight.

Your story sounds so familiar. Even depression & psychiatric symptoms can be caused by gluten intolerance. I remember in high school reading about patients in mental hospitals that were hypoglycemic/diabetic back in the "olden days." We don't fully understand the mind/body connection even in our modern world. It's easier to throw at pill at something than it usually is to find the root cause. It's easy to feel depressed when you feel terrible.

I think you would feel rather comforted and at home if you started reading the threads that go back 3-6 months here on the board. I think you'll see you're in a similar boat.

Hang in there,

FooGirlsMom

I think it's what I call this whole intermontane basin between the Sierra and the Rockies, the high plateau country, cowboy country still. You almost expect to see the chuckwagon roll in and the cook pull out his sourdough starter and bake some bread. The big events in Reno over the summer are Rodeo, Hot August Nights (hotrods), and the big chili cook-off. It doesn't even sound vaguely gluten free

I hear you!!! You nailed it. It's the same here. We've lived here now for almost 13 years and things are slowly getting more 21st century, but there is a strong heritage toward "the old" here. So whole wheat is king. You can find 101 ways to use wheat you grind yourself We're sort of at the beginning of the curve, so to speak. gluten-free products are becoming available at Whole Foods, Harmons, Smiths, Macey's (a local Associated Foods store), etc. but you will pay for the privilege.

I envy those in Mass. & Colorado & the Northeast. A number of our family members live up in the Oregon/Washington area and gluten-free is so much easier to come by...*sigh*.... I knew we were in a different place when the day we drove into our smallish town to move into our new home I saw a sign for a donkey basketball event. ** Ye haw ** lolol It's a far cry from California where we came from.

FooGirlsMom

I use Bob's Red Mill Gluten Free Quick Cooking Oats. They work really well even for no-bake cookie recipes

FooGirlsMom

Hey Mushroom,

I feel your pain. We are about 7 hours north of you in Utah. It must be that here on the western side of things it's taking a bit longer to "get with it." The Salt Lake City area isn't *too* bad. There are some specialty food stores for gluten free but the prices are prohibitive. I am finding myself ordering online with free shipping for some staples. Thankfully we have Winco's here so we can get Udi's bread (Whole Foods doesn't carry it) for around $5 a loaf. They have gluten-free Betty Crocker cake mixes for $3.17 a box vs. $3.79 at Walmart and $4.79 at some other stores.

We have a local restuaurant - Madeline's - that is catering to gluten-free. Haven't eaten there with DH being unemployed for the past six months, but at least someone is trying. We now have a gluten-free bakery south of Salt Lake. So, slowly it's getting there.

I'm just looking forward to the time when it's easier to come by these products and the prices go down.

FooGirlsMom

Congratulations!!!

Isn't it wonderful?!!

I've lost 20 lbs and 2 sizes in just about 2 months also (without even trying!) Like GlutenFreeManna, I'm planning to drop the carb count a bit lower and take off some more. I'd like to see another 20.

I'm really so happy for you. I am one of those people that inexplicably gain on gluten too. It's so nice to finally know what caused the gain!

Smiles,

FooGirlsMom

I'll throw my 2c worth in. I notice my energy drops significantly if I forget to take Sublingual B complex 2x a day. I have given it to my husband and kids and they now come clamoring for it whenever they start feeling tired in the middle of the day or didn't get enough sleep. The stuff's amazing. I buy one that costs about $6 from Walmart (Spring Valley?) It's gluten-free and tastes nice and there are a lot of doses with that dropper bottle

Hope you feel better soon,

FooGirlsMom

Yes, it can. Because this is auto-immune, it can break down different parts of your body. About 15 years ago when I had my first systemic break-down I caught every single cold & flu that went around even if no one else in my family succumbed. It was very frustrating. It took the right diet & exercise to break that cycle. I am very surprised that as bad as my health became in the past 2 years that didn't happen to me this time. However, I have been more active in spite of pain & pounce on illness more quickly than I did then. I use various naturopathic products to stave off illness.

I hope with change of diet you get the same results I did.

FooGirlsMom

Could be the amount of oats you ate in a day. I tolerate rice extremely well but if I eat too much within so many hours, I gets slightly symptoms of being glutened. I think sometimes we can only tolerate so much grain in a close period of time. I'm noticing this with myself too. I do best to eat mostly meat & green veggie, and save the starches (even the gluten-free ones) to add to the other things - like a side dish - vs. the main meal.

I feel for you!

FooGirlsMom

Yep. No, you're not a loon. My medical history was complicated too. I was really sick in my 20s after the birth of our son and it progressively got worse until he was around 3. Then I had 2 of the sickest years of my life (until 2008 that is). The doctors didn't know what was wrong with me. The specialists couldn't figure out why my hormones were off, I had chronic fatigue, etc. My husband, who was used to me being a very active person when he married me wondered what happened.

Eventually I had to turn to "alternative" medicine to try to get better. Since I had a systemic yeast problem (Candida) I went that route. I happened upon a diet called "Body Ecology" which cut all grains except amaranth, quinoa, buckwheat & millet, no fruits but lemons & limes, and veggies. It was gluten free, dairy free & sugar free. I had no concept back that that Celiac/gluten intolerance could possibly be my problem. The diet did work though. I felt better. Not 100% but maybe 80%. I gained weight due to gluten, just like you. I put on FORTY pounds in one calendar year when I was so sick. I took of 20 through the BE diet. Then I wanted to take off some more weight so I found Atkins because I knew I was carb sensitive somehow...I always seemed to gain on bread. (If I'd only known). The Atkins diet (the induction version) did help me lose. I took off another 10-20 and would keep taking off the 10-20 over and over again because going back to "normal" food always caused weight gain.

I wasn't at my ideal weight, but I was ok until 2008. Then the stress of my mom having a stroke & all the aftermath, upset my food, exercise etc. routine. Within 4 months I wasn't feeling too well. 4 months after that I was sick. The chronic fatigue was back but instead of having hormone problems & yeart issues, I was suffering from fibromyalgia symptoms, heart-palpitations, high bp, and you name it. I tried everything. Nothing was working. I even tried going back to low carb but I could feel how weak my body was and it felt like my kidneys hurt when I would be on that diet. So I went the "whole food" route complete with whole wheat, like I grew up. I was getting sicker and sicker. My legs got to the point where they hurt when I went up and down the three sets of stairs in our home. I was walking like I was 90. I didn't tell my husband the half of it. We had no insurance (and still don't) and I was secretly terrified. My legs were tingling all the time. I was becoming heat intolerant last summer and felt like I was dying on an outdoor shopping trip. These are now symptoms (and a couple of others I had ) of M.S. By Sept/Oct of this year I was wondering how much longer I had on this earth. I could feel that I was slightly anemic & having vitamin absorption issues. AS I looked up symptoms online - it was all pointing that direction.

It wasn't until I met up with a friend who has Celiac in late Sept. that the bells started to ring. I had no idea that gluten intolerance was auto-immune. Even when I was eating gluten-free some years back, the longest I stayed on the diet was 6 months because once my symptoms improved (the insulin resistance & weight gain) I would eat healthy, and "normally". So I never experienced years of gluten free eating and therefore never experienced 100% recovery.

I've been gluten-free since October and it's been a bumpier road than I had 10 years ago, for instance, but I was also in much worse shape. I'd never "glutened" non-stop for 2 straight years since I was first sick back in the 90s. I am 110% sure, given my medical history (I accidentally found gluten-free just by treating symptoms) and when I glutened for 2 years I was getting an auto-immune response that worsened MONTHLY. I knew I was dying. Seriously. I could feel myself growing sicker & weaker by the calendar month. In just a couple of months I am on the road to recovery now. It'll take a while to get back to something like normal. I still have arthritic issues at times and some achiness, but compared to 2 months ago - wow! Losing about 20 lbs didn't hurt my feelings either.

I know exactly where you are coming from. I will never need to seek a diagnosis. It's a sheer miracle, to my mind, that as sick I was 2 months ago, that I feel as good as I do now. I'd still like to feel another 25% better, as most days I still feel I'm functioning at about 65%....but every now & again I have an 80-85% day and it's like turning back the clock and it feels WONDERFUL.

So hang in there and stay gluten-free. I don't care what a doctor says. I just want my life back! It's been tough on my kids and husband too because mom has been sick the past 2 years. They want me back too.

Take Care,

FooGirlsMom

This is why I don't bother with a support group of the traditional kind. You all here are my support group Those of us here run the gambit from light symptoms to major illness. Some are diagnosed & some are undiagnosed but know they are gluten intolerant & respond to the diet. The reality is that some of us have lingering issues and will for many years depending on how bad our health became prior to going gluten free.

I know from personal experience, having been really sick in my 20s, going on a gluten-free diet really by trial & error, and seeing a huge measure of recovery for many years, then 2 years ago eating gluten at levels I'd not done since my 20s, and within a year I'm so ill I wonder if I'm dying...takes me another year to figure out what the problem really is (I was having different symptoms than in my 20s) and here I am just over 2 months later and I am seeing a light at the end of the tunnel (and it's not a speeding train!)..but I'm by no means "well" yet. It's coming along nicely & some days are better than others. But rooting out secondary food allergies has been a job, let me tell you.

You are not being negative. You come here and gripe, cry and scream (and laugh sometimes too) all you like. We'll always be ready to listen. Some days I come here to remember I'm not crazy & find a bit of sanity in my day. I thank you all for that. Truly.

FooGirlsMom

You might want to check out the website www.doctordavidclark.com and click on the info for fibromyalgia. There are 7 things that can make it worse. I have fibro symptoms too and I notice that when I follow what he states, the symptoms do get better.

Hope you feel better soon,

FooGirlsMom

Hi

I went gluten free in October and, like you, I've been trying to narrow down other food sensitivities. I think what others have said is true -- we react sometimes to even the right foods due to leaky gut issues. That aside, I did notice some violent reactions after the first 2 weeks to dairy & soy, in particular. Cut those out. Then I started to notice corn was giving me indigestion & D. I have tested this off and on for the past two weeks and I'm right about dairy & soy. They are a problem. However, the corn is hit & miss. For instance, I bought Mission brand tortilla strips (in the brown bag) and ate guacamole with it - I was just fine. Odd! So I think maybe corn isn't going to be an issue as I go forward as I heal & get a company, like Mission, with dedicated Mfg. lines.

For an eliimination diet with our issues - it's tough. I wanted to do one and when I realized there was no true "safe" food for us Celiacs - I mean some people reacted to fruits & certain veggies - my choice was to eat simply with basic foods and pay attention to what didn't "set right". I'm at the point, in the past week, that I'm great about 80% of the time.

I would suggest you keep track of foods from certain mfr's. I think a lot of my own issues came from the processing even with foods I'm really not allergic to.

Good luck and keep us posted as to your progress. I'd like to know what route you take & how it works for you

FooGirlsMom

We're still working through how to deal with possible cross-contamination issues. I really suggest with the butter that you get your own covered dish. I just decided to do that myself. I think I forget more often than my family does. I have such a habit when I butter their toast (I have my own toaster for our daughter & myself) of redipping the knife after touching wheat bread, it's hard to remember not to do it. I was getting pretty good at buttering our bread first with a clean knife, but I have given up. We have our own butter dish now. It's just easier.

It's been my observation that if you label things & have your own "off limits" section of the kitchen, men adapt to that easier. I wouldn't want to have to learn every tool in the garage if the situation involved his tools and I couldn't touch some and then touch others. It'd drive me nuts. So...I've had mercy on the DH and turned the entire kitchen gluten free except his bread basket, toaster & some condiment shelves in the fridge that are clearly labeled (so he knows where to return his stuff.) All the gluten is in the basement storage and he can eat to his hearts content from there.

Good Luck!

FooGirlsMom

LOL Bugles were my favorite food as a kid. And I did the fingernail thing too. I guess girls are all pretty much the same

FooGirlsMom

Ditto with Skylark. At this point, with your daughter not thriving, and having the malabsorption issues, do whatever it takes to get her to normal. Gluten free isn't a dangerous diet. It's still nutritious and healthful. It just lacks certain ingredients. Everyone has diets that lack certain foods even if it's just because they dislike those foods. How many kids won't eat peas or broccoli but will eat green beans? Lots.

Taking her gluten-free, if you get results from it, is information enough. If that doesn't fix it within the time frame you saw before, please follow up with other testing (and possibly genetic as I mentioned before).

Hang in there,

FooGirlsMom

Yes unfortunately it is very individual and there isn't a formula to it. Some can't tolerate citrus due to the acidic nature of the foods. Others are sensitive to the sugar levels of high glycemic fruits and have to stick with the lower index variety. Others can't eat fruit at all.

Hope you find what is right for you.

FooGirlsMom

Hi,

We're doing ok but feeling the pinch slightly in the checkbook as well. DH has been unemployed since July & I'm working PT to make ends meet in the meantime.

Doing gluten-free cheap helps a lot when you are a SAHM. If you work (even part-time) esp. with the numerous kids, time and energy can be a challenge. If you have lingering health problems due to your gluten problem, it gets harder.

Prepackaged mixes are expensive. The real savings is what other posters have mentioned - focusing on naturally gluten-free foods. I just bought a huge bag of jasmine rice at Walmart for about $14. I'm sure an asian market might even be cheaper. I have cooked rice with gluten-free broth & a package of carrots/peas for a side dish. I have cooked rice with coconut milk & raisins for breakfast, where everyone adds their own sweetener. You get the idea. Rice is really versatile and takes about 20 minutes to make even a large amount.

You don't have to go completely gluten-free in your home. You just might want to segregate your pots & utensils & buy a cheap toaster & label it or keep a towel over it so no one else uses it.

Let's face it. gluten-free pasta costs more than wheat. gluten-free bread costs more, etc. The only way we're keeping our heads above water is by finding the meat sales & using rice & produce on sale (or frozen).

I'm feeling your pain, girlfriend. We're having difficulty feeding 4 people on $150 a week including household paper goods, toiletries etc.

FooGirlsMom

The advice here is quite good. The fact that a gluten-free diet returns things to normal is a sign.

If you still have trouble, you might also have her tested for Cystic Fibrosis. My best friends' girls have it and one presents primarily in the lungs, the other in the intestines (this child is now diabetic). CF causes the body to malabsorb fat (greasy stools). So the kids are thin & have some of the same GI problems as those with Celiac. I'm not saying your child has CF, but CF kids don't digest food either & they have to take very powerful enzymes to be able to digest. As babies, their capsules are opened & sprinkled on applesauce or yogurt to get them down before they are old enough to swallow pills.

What you are describing is cause for concern. As Mushroom said, it can be enzymes or other issues. Not sure this is one you are going to resolve yourself. Keep at the doctor (or switch) until you get someone to listen to you. Being unable to digest food can cause a child not to thrive and if it's something more serious like CF (which can be proven through genetic testing), then immediate & continuing treatment is a must.

Please keep us posted.

FooGirlsMom

Hi Jamie,

I had the same issue only my honeymoon period lasted almost 2 weeks. I was riding high, thinking, oh wow, I feel almost normal. Then I got slammed. Secondary food allergies kicked in. Over the course of the last 6 weeks or so I've been experimenting with removing other foods from my diet. I found that I reacted very badly to soy & dairy. Then corn seemed to upset things. I am still working with that one because it seems to be intermittent. I have had some horrific reactions to "safe" foods. I did some reading and it's got to be related to the leaky gut issue we have with Celiac. One thing to be watchful for is overeating. I'm not sure why but some of us cannot get "stuffed" when we eat. Others have weakened abilities to process sugars, etc.

Just to give you an idea...I'm feeling best right now on a diet of meats, green veggies. Fruit seems ok if I eat it by iself.

Hang in there. The road back to health is sometimes paved with many challenges. I have had 2 meltdowns due to food frustrations since October.

FooGirlsMom

Ditto what Skylark said.

FooGirlsMom

Ok I have been laughing for the last 5 minutes and had to share that with my husband. How awful and hilarious at the same time! I know just how you felt. I fell coming out of our bank one night and tipped over the side of the curb, ripped out both knees of my jeans on horrible gravelly blacktop right in front of heavy traffic going by. I unlocked my car and was barely able to climb in. I was in so much pain I just sat there and cried. But I was even more mortified than I was hurt. My first thought was how do I get out of eyesight before someone tries to come to my rescue. My knees were chewed up and I was bleeding and the jeans were ruined (my favorite ones too) but my ego was more damaged.

I was thinking - man - you thought you escaped only to find out it's on tape! ROFL

I hope you feel better,

FooGirlsMom