FooGirlsMom

You rec'd some great responses. I just wanted to add something else. Chemicals. If you eat aspartame, stop immediately. Some people (like myself) will get a migraine each and every time I ate it. Gluten gave me headaches too. I also have to be careful with sugars. High Fructose Corn Syrup is a huge offender. I am ok with real fruit but anything too concentrated...forget it. Even chocolate will give me migraines if I eat it 2 days in a row.

After you've ruled out gluten sneaking in, you might want to start testing food reactions to things you regularly eat and see if you react to them. I did that and I found the above.

I really feel for you. The psychological symptoms do seem to point to gluten but chemicals can have the same reaction in some people. If you are not on a "whole foods" diet, you might want to give one a try.

Take Care,

FooGirlsMom

Hi,

Working with your doctor to identify your vitamin deficiencies etc. is really important. Once you've done that and you are 100% gluten free for a while, if the pain does not subside, you might want to think about eliminating other possible offenders. For instance, I had terrible joint pain, esp. in my right hand. My knees bothered me too (sometimes ached like I had the flu). My problem, I came to discover, was not caused by gluten. It's soy for me. In fact, right now, I am having trouble typing this because my right hand joints are so inflamed they hurt to move them. It's my own fault, but yesterday I ate a homemade salad dressing I make for my family that has mayonnaise in it (without thinking). The mayo's first ingredient is soybean oil. Each and every time I eat soy (not soy lecithin which is a fat I understand) but regular soy, esp. soybean oil, this happens to me. It only took about 2 hours and my right hand and elbow hurt so bad I could hardly move my fingers or close them. This will probably last 2-7 days before it's gone. Prior to this I'd gone 2 whole weeks with almost no pain or noticeable problems at all, just occasional stiffness in the morning.

While your intestines heal up from gluten, you can be highly reactive to other allergens like soy, corn, dairy, nuts, etc. There are 8 main allergens including gluten.

Just something to keep in mind. You'll have quite a journey the first year on the diet and it might take a little tweaking before you get it 100% right for you.

Wishing you quick recovery,

FooGirls Mom

Yes, gluten withdrawal is real. Many people who go on low carb diets, for example, experience the same thing. I didn't know what it was 15 years ago when I first experienced it because I didn't know it was gluten. Low carbers call it "carb withdrawal".

My symptoms always are: headaches, weakness, periods of brain fog, fatigue, flu-like feelings, occasional dizziness, sadness/melancholy to name a few. The same thing happened when I went gluten-free.

Hope you feel better soon.

FooGirlsMom

Hi,

I can only tell you what I experienced myself.

The first flare-up of Celiac/Gluten Intolerance about 15 years ago caused me to have long cycles. I was like clockwork before also. Then my hormones were off due to progesterone problems. A gluten-free diet corrected these problems.

I always had problems with mouth sores and did not know (until recently) that they are common in Celiacs. My daughter is still struggling with them so I'm trying to find where the gluten is coming from..(probably candy).

I always bloated after alcohol (wine) due to the nitrates/nitrites. I can't eat lunchmeat with it either. I have to buy the natural kind. I'm allergic to them. The high fat foods? Can't help you there. Only with bread/cereal/gluten.

You might be having trouble distinguishing where your symtpoms are coming from due to not being gluten-free yet. I am not allergic to gluten - meaning I don't have a reaction within an hour. Mine comes during digestion when it reaches the intestines - within 24 hours. Then I bloat like a blow fish. So you could be eating cereal for breakfast and not notice symptoms until dinnertime, for instance.

Until you are gluten-free, you may have trouble figuring it all out. Good luck.

FooGirlsMom

I had the same problem, but mine lasted weeks. I found that eating white rice helped and watching my ratio of green veggies to meat/starch. Even then it just took a while. I've been on the diet just over 3 months now and have only been what I'd call "normal" for the last 3 weeks. It's also coincided with feeling a great deal better & having some of my food sensitivities diminish. I can eat small amounts of cheese now and I was having big problems with dairy at first. I ate chocolate (with soy lecithin and dairy) and was fine. The latest is that I can eat Mission corn chips (they have dedicated lines in mfr'g) and I'm fine. I had to give up dairy, corn & soy. Now soybean oil is still a No-No but I think I've always been somewhat allergic to it even when I was healthier.

Once you root out your sensitivites, I think it's just a matter of time for the intestines to start healing. I find it interesting that my bowel disturbances clearing coincided with being able to reintroduce the items successfully. It speaks to the advice you get so often to eat a whole foods diet for a while & let your intestines heal.

Hang in there,

FooGirlsMom

I've been gluten-free for 3 months now and the first month my cycle was really difficult. I was a bit late & my symptoms were like I was eating gluten again. Boy was I emotional and tired (emotional was not a normal part of my PMS, just fatigue, achiness, flu-like). Then month #2 I was on-time but I felt awful - again - emotional & tired. Here I am just a few days before my onset and I'm feeling really good. I have seen an overall improvement in my symptoms this month. I lived a primarily gluten-free lifestyle for years and 90% of the time had problem free PMS weeks. The past 2 years have been BAD. I also went from a 4 week cycle to a 3 wk 3 day cycle, which returned to 4 weeks last month after going gluten-free. So here's to hoping...

One thing I can tell you to feel better (and I did this even before gluten-free). Take a gluten-free vitamin B complex supplement in the PMS week, if not regularly. It really helps most women I know.

Hang in there. You're not alone. I was really surprised at how awful my first 2 cycles were after gluten-free. This month, so far, is much more ideal.

FooGirlsMom

And what about all those Atkins people? How many of those that stick to the diet do so because the lack of gluten has made them feel better, and they don't even realize that that's what it is.

Yeah- hey! I was one of those "Atkins People" for over 11 years! I never could figure out why I would detox for 2 weeks solid, then feel great but everytime I tried to eat pkg'd low carb food (hidden gluten) I feel awful but if I ate fruit I was ok ???? Talk about confusion. There are a TON of low carbers out there that can't lose weight or feel right except on the diet. The sad part is that so many of them probably do not have to be completely grain free. They just need to be OCD about gluten & possibly dairy.

I am self-diagnosed by the way. After racking up about a dozen symptoms over a 2 yr. period (after going off Atkins) I felt like I was dying. I ran into a friend with Celiac and made the connection. The only way I'd been eating (to feel well for about 13 years) was 2 different diets that were both gluten & dairy free. Guess what? I'm feeling better! I've been gluten free & mostly dairy free for about 3 months. Ha - amazing.

I would have tried to get a diagnosis (for the sake of my kids and have them tested too) but this all happened right after my DH was laid off & we don't have Med. Insurance. Now it's too late but I have my answer. I've been proving it myself for 11 of the last 13 years that I'm either Celiac or Gluten Intolerant.

It's a relief just to finally know what this is - not just treating symptoms & happening on something that worked.

FooGirlsMom

Even though we have a limited budget I do buy some gluten-free staples. I have a 9 year-old daughter who is gluten-free with me so I have tried to not change her diet too drastically to ease the transition. So we invest in auto-ship/order items like Annie's gluten-free mac n cheese. That's my DD's comfort food. We buy Tinkyada's pasta and gluten free Rice Grits to make hot cereal. Betty Crocker's gluten-free cake mixes work well for us and are a jumping off point for some recipes. None of these items are so expensive they become cost prohibitive. Thankfully, places like Walmart & Winco are carrying naturally gluten free items along with some of the gluten-free mixes. We do splurge and buy Udi's but limit our intake to 2 pcs a day to save $.

Things can get expensive fast if a person is not careful, but I have to say that I am super appreciative for companies who are offering gluten-free products. I wholeheartedly support the big contenders like Walmart getting in there & bringing down those prices because they can purchase by volume. I know that's controversial for some, but it's the only way some of the little guys are going to get access to these products at an affordable price.

FooGirlsMom

Yeah I noticed that response or two you got was pretty grouchy. I have never heard anyone bicker with someone about a diagnosed medical condition - let alone completely miss the point of the post. All you wanted to know is how hot does the water have to get to destroy gluten and can it hang around with normal washing & still contaminate someone.

Brother!

FooGirlsMom

It would seem to me that anything you are "officialy" diagnosed with is easily obtainable via medical records so keeping Celiac a secret (which is a chronic condition & auto-immune) would need to be disclosed.

However, if you know you are gluten intolerant/celiac and it's not recorded anywhere, then I don't see how it could become an issue.

It's all about the documentation.

FooGirlsMom

Hi,

My first thought is the Chex. I was having the exact same issues (warmning for the squeamish bc this is definitely TMI!) my bm's had a faint odor of petroleum! Say what??! Like if you stick your nose in a Vaseline jar! That is what happens when I eat Chex.

Just thought I'd try to give you a place to start...

Hope it clears up.

FooGirlsMom

PS You might want to stick to a whole foods diet for a while to get an idea what you are reacting to. It really helped me.

Sorry to hear you're feeling poorly

I see you do the FODMAPS diet. Have you ever tried going strictly low carb? Like meat & green vegetables type of low carb? I'm about to go there myself. I think until my intestines heal I'm going to have to go back to an Atkins type of diet. I seem to be having brain fog & energy reduction due to all carbs now. If you need a low carb diet I can suggest either the Induction version of Atkins (with probably not so much focus on the carb count - eat the veggies you want) or the Protein Power diet.

I hope you feel better soon.

FooGirlsMom

So glad you found a bread you like! Enjoy!!

FooGirlsMom

Hi,

By the way - welcome - and congratulations. I hope this does the trick for you too.

To start by answering your questions...answer to #1...no. If you are Celiac or Gluten Intolerant, it's super important to stay away from all things gluten - forever. I'll give you the example from my own personal history. I was super sick in my 20s. Really sick. I "accidentally" happened upon 2 diets that helped. One was Body Ecolody (Gluten Free, Soy Free, Dairy Free, & sugar free with almost no fructose). In 3 months all my symptoms cleared. I thought I was treating Candida and hormonal imbalances. I was a healthy eater too (can you say whole foods and whole wheat??. Anytime symptoms re-occurred in any form, I'd go back on the diet for a month. Lo and behold the symptoms cleared. Then a couple of years later I wanted to lose a bit of weight. So I found Atkins - sugar free, dairy free, & gluten free. I felt like a million bucks. I stayed on this diet, sometimes a total of 6-8 months out of the year to control "symptoms". This went on for 13 years total. I had varying levels of "wellness" during this period because I didn't stay on these diets 100% all the time.

I come to 2008 and I am off the diets. For a year I'm glutening at a level I haven't in 13 years. Within months I'm not feeling too well. Within a year I am showing signs of auto-immune diseases. Each month thereafter I'm developing new symptoms by the month. I hit October of this year and I'm wondering if I'm going to see my next birthday. I feel like toast.

My point in telling you my story is this -- if gluten is your problem the only way to "recover" and stay "recovered" is to eat a gluten free diet. I look back now and I can see very clearly that "to the degree" I ate gluten-free was the degree of health I experienced for 13 years. I was still damaging my body and didn't realize it then. So I've had 2 episodes 13 years apart of extremely poor health with some years inbetween that varied from excellent to ok.

My conclusion? Go on the diet and STAY on the diet if you feel better.

I also want to add that I hope going gluten-free will do it completely for you, but many of us find that secondary intolerances kick in after the honeymoon period. Mine lasted a full 2 weeks. Then I discovered that dairy, soy & corn are bothering me while I heal.

To your 2nd question: Yes, it will take time to heal. Since you're a healthy eater, try taking a look at your green veggie intake and make sure it's high enough and that with it, you're drinking enough pure water. Probiotics can help restore good bacteria to your gut and get things moving often times. Beyond that, I'd experiment with food intolerances. See if one of the top 8 allergens (well lets make it 9 with corn added) is constipating you by eliminating the one at a time for a week or two each, then reintroducing them. Wheat is a top 8 allergen and that's gone. So at the 2 week mark, you could start with soy or dairy, 2 big culprits.

Good luck to you and hope you are feeling terrific soon,

FooGirlsMom

Hi,

If you looking for a diet to help with behavior, you might consider a Gluten-free Casein-free diet. Gluten Free Casein Free means no gluten and no dairy products. There are numerous places on the web that will explain the diet if you Google it.

There are a number of people who have seen good results with stricter dietary changes than just Gluten Free. Some kids are highly allergic to other foods and react badly to them.

If you are interested in going gluten free (or any other type of restrictive diet) it's going to take a really high level of involvement to make sure you have certified gluten free foods or are eating whole foods that you know are not contaminated.

The good news is that there is a lot of support out there for moms like you. Many people with kids having autism use the Gluten-free Casein-free diet and it works.

Good luck,

FooGirlsMom

I FORGIVE YOU!!!

I am a Georgia girl, and while the idea of sweet grits makes my stomach turn (maybe that's the baby) it IS acceptable as far as I am concerned

Although cheese grits? DELICIOUS....are there gluten-free grits?? I miss them.

Yes - we eat Rice n Shine rice grits made by Arrowhead Mills. It's marketed as a hot cereal but is just brown rice grits & it's gluten-free. I've never reacted to it. I buy it on auto order from a big book store online & get free shipping & 15% off due to the auto order, bringing it down to about $3 a box which is the same price it goes on sale for at Whole Foods.

FooGirlsMom

Hi there,

Yes, gluten-free foods do cost more, in some cases, than their gluteny counterparts. Very true. My husband got laid off from his good-paying corporate job end of June and I found out about the Gluten problem in early October. Now I have less time than I did before because I've been working part-time since June due to the unemployment issue to make ends meet. So I have less time and less energy (though eating gluten-free is helping with the energy now).

The trick to eating gluten-free on a budget is to eat normal food as much as you can -- fruits, vegetables, rice, meat, etc. If I shop wisely, these foods aren't too bad. It's the "extras" that are gluten substitutes - like bread, cake mixes, flour, etc. that can get pricey. My son is home on college break right now. He doesn't eat gluten-free, nor does my husband, but my daughter and I do.

I was lucky to get a super deal around T-giving for Jules' gluten-free flour blend, along with her e-cookbooks, so I use some of her recipes when I don't mind spending the time baking. Otherwise I buy Betty Crocker cake mix at a discount store for $3.17 each and order some staples like Rice & Shine (gluten-free rice grits) at a large online store with super saver shipping & 15% discount for auto-order. I do the same with Annies Mac n Cheese in the gluten-free variety (my daughter's special food), as well as, Tinkyada's pasta. Those items are pricier but I try not to serve them too many times a week.

For breakfasts we eat rice & shine, eggs & potatoes (and for a treat - Honeysuckle turkey links) etc. Lunches are usually sandwiches with leftover meat from dinner, salad, etc. I have gotten creative and found many ways to cook jasmine rice (which I can buy in a HUGE bag at Walmart for less than $15) - as a side dish, as a breakfast cereal, to make soup bulkier, etc.

I can't imagine what someone would be spending if they were eating out a lot or trying to buy convenience foods gluten-free. It would be staggering.

If a person is willing to cook 1 day a week, gluten-free can be done on a budget. "Goodies" can be cooked with cake mixes. I made the Betty Crocker carrot cake with cream cheese frosting for my family this past week and I took a bite -- yeah it was pretty delicious. Those could be frozen & wrapped for a single person to thaw at will

Thankfully food stamps in this country (if a person was really desperate financially) will cover many simple gluten-free foods like the ones I mentioned. So most people won't starve on a gluten-free diet even with reduced funds.

FooGirlsMom

PS...but I agree...I would like to see more stores like Walmart & other big contenders in the food market get their buying power at work & get the prices dropped on most gluten-free foods.

CompuCajun,

I had the heart palpitations too. I still get them if I eat something I'm reacting to - like soy. It's scary when it happens. I thought I was dying prior to figuring out what was wrong with me. With all the auto-immune symptoms, then the palpitations, then the neuropathy...mercy...I was 42 and not expecting to see 43.

Amazing what a difference almost 3 months makes...

FooGirlsMo

LOL you're too funny

Since going gluten-free, I've found about a dozen ways to eat rice grits (we buy Rice n Shine). One of our favorites is to make them with raisins & then add a little honey & homemade applesauce (with sugar & cinnamon included). My husband is not gluten-free and he gobbles them up. We've also made them with brown sugar & maple syrup, with cooked apples & raisins, with bananas & maple syrup, you get the idea. You just experiment with all your favorite breakfast flavors

It's funny that it's not proper to eat them as a breakfast cereal. That's the only way we eat them. I ate them "regular" in college (in Texas) and they were ok but I think they are a stellar breakfast food.

If I eat a side dish, I really just prefer the regular rice seasoned up different ways. (Though I have been known to cook rice in water & coconut milk with raisins & add cinnamon & honey LOL)

Rice is a great food no matter how you make it!

FooGirlsMom

Here's a list of the top 8 allergens for foods. Being gluten-free you are obviously good with the wheat. I didn't realize until I went Gluten-Free that I was reacting to other things on this list. Milk & Soy for example (I don't eat shellfish anyway). Corn is one I'd add to this and make it 9. I react to corn too.

You can see that almonds are on this list. You might think about switching your milk to a gluten-free rice milk (be careful because Rice Dream is barley processed). I use So Delicious Coconut Milk just fine. The unsweetened is really good.

* Milk

* Eggs

* Peanuts

* Tree nuts (such as almonds, cashews, walnuts)

* Fish (such as bass, cod, flounder)

* Shellfish (such as crab, lobster, shrimp)

* Soy

* Wheat

Here are some of the symptoms of sea food allergy:

Shellfish allergy symptoms include:

* Hives, itching or eczema

* Swelling of the lips, face, tongue and throat, or other parts of the body

* Wheezing, nasal congestion or trouble breathing

* Abdominal pain, diarrhea, nausea or vomiting

* Dizziness, lightheadedness or fainting

* Tingling in the mouth

Hope you find your culprit!

FooGirlsMom

Ditto Skylark. I am off dairy but if I don't eat too much of it, I can eat gluten-free chocolate.

I started with dairy and then realized while it cleared some symptoms it didn't clear all. I then discovered I was really reacting to soy. BADLY. I can't even eat soybean oil like in Best Foods Mayo. It makes me feel nauseous within minutes & then I have painful joints for 24 hours. Corn was 3rd and seems to be the last offender for the time being. It causes the least amount of symptoms.

Good luck

FooGirlsMom

Ditto what everyone else said. I've had a number of symptoms you mention also. The neuropathy was one of the last symptoms to develop about 3 months before going gluten free. Some of what you describe sounds like a mixture of auto-immune response (symptoms of fibromyalgia, MS, or Lupus) and vitamin deficiency. When the gluten affects your small intestine (Celiac) you will start to have vitamin issues.

Whether or not you opt for the biopsy (I too would consider myself diagnosed with your blood work results)it would be wise to follow-up with the doc to test you for vitamin levels - iron, b12, etc.

Just be aware that when you go gluten-free, while many of your symptoms will reduce or go, many of us have had to take other foods out of our diet to stop most of the symptoms. For instance, I have an arthritic problem in my right hand. If I eat corn or soy, I get painful swollen joints in my hand, the joints pop and want to stay in place & I get a mild migraine behind my right eye. The days I have stayed off both - I feel fantastic. Another example is heart palpitations & tingling in my feet (circulation issues I think) from either soy, corn or dairy. These things may go away in time. I never remember dairy or corn affecting me before so maybe in months or a year I can eat them again.

It sounds to me like you have a big change coming when you go gluten-free in your future & root out all secondary food sensitivities while you heal.

Hang in there and please let us know how you're doing.

FooGirlsMom

The tendency to blame things on Celiac, I think, is fairly valid. When you are dealing with an auto-immune disorder, many of us have experienced it attacking nearly every part of our body it seems. I, too, am still amazed at the little things. I never even thought about the clumsiness until I read this post. Then I thought, hey, when I am feeling really good, I'm not clumsy. I was feeling poorly the other day and I was dropping everything and bumping myself constantly yelling, "ow!" Never even dawned on me as it's happened so gradually & been so long. When symptoms come on gradually it defines a new "normal" until those symptoms clear up and you go - hey - wait a minute - was that Celiac-related too??!!!!

I do know that when I had my first attack in my 20s it did affect my immune system in a great way. I got every single cold and flu that went around. After going gluten free by accident I did notice that I hardly ever got sick anymore.

It stands to reason that weirdo symptoms will clear as the entire body heals. I used to think I got heat rash all the time. 50% of the tiny red bumps (looks like razor burn) have cleared on my legs etc. Places I don't shave.

The amount of differences you notice probably depends on how bad your symptoms got. I knew mine were getting severe and seeing a reduction in pain, achiness, etc. I am not surprised at, but things that have been normal for years like those rashy bumps clearing surprised me.

I think until a person experiences the changes it just sounds like we're nuts blaming the entire universe on Celiac but hey...if it's health-related & it really does go away or lessen...I say the proof's in the pudding.

FooGirlsMom

I crave bad foods when I get ahold of things I don't tolerate well, like soy. I also do it when I'm hormonal. The only thing I can suggest is to have goodies around that you can eat...like chocolate or chocolate chips you don't react to. You can also bake things like banana choc chip bread (wrapped & frozen) and keep them in the freezer in safe zip locks for moments of "crazy". If you aren't allergic to dairy, I just made the Betty Crocker recipe for carrot cake (using 1/2 applesauce, 1/2 butter for the butter amount) and it was so good everyone was oohing and aahing who don't eat gluten-free. That can be wrapped and frozen too.

I really find that "dealing with reality" is so important. If you prepare for failure with a back-up plan you will feel better.

The cross-glutening is tough in a restaurant. I don't know if you have to eat out due to business or not. If it's your choice, you can eat at home & have separate items to cook with. I cook gluten free & non-gluten free because 1/2 my family is and 1/2 isn't. I make desserts gluten-free so I don't have flour floating around the kitchen and since my gluten-free desserts don't taste gluten-free no one complains. They ooh and aaah.

Reality is - you have to work around the gluten in your household. I would suggest that you work out a time with your family members when you can have the kitchen to yourself (cleaned & scrubbed) like a weekend day and do your week's cooking ahead of time, except simple things like salads & pasta. Freeze & store (or refrigerate if it'll keep) and take a load off yourself. You can have clean surfaces to work on. If I am ever "suspect' of a surface that just had bread on it, I use a pc of wax paper to work on.

Hope you make it through. I know it's hard and frustrating sometimes. You can do this. We all have had to even though we don't really want to. Health is worth it though.

The weight will come off if you stick to the meats & green veggies primarily & watch your fruits & sugars & simple carbs. But first you should focus on changing habits and going gluten-free. I blow up like a blow fish with gluten & allergens I can't eat too. I'm still losing wt. myself. Trying to move more helps too.

Hang in there and here's a hug (((HUG)))

FooGirlsMom

A couple of thoughts came to mind as I read your post.

I saw the most severe onset of symptoms right after antibiotic rounds back in 1991/92. I got strep, took antibiotics and it didn't cure it. Had to take a broad specrum antibiotic and that did it. I was left feeling really really bad afterward. I found out later the reason for this is that antibiotics are not particular. They kill bad bacteria AND good bacteria. It very well could be that you are devoid of good bacteria. Have you ever tried taking high quality (and expensive) multi-bacteria probiotics? I had a yeast overgrowth (candida) that could only be cured through probiotics and going on a diet that was devoid of all sugars (even fruit). The only fruit I ate was lemons and limes and the only sweetener I used was stevia. There was no dairy. The grains I ate were amaranth, quinoa, buckwheat, millet & corn. I healed up pretty nicely in about 3 months and the GI problems stopped during that period.

The difficut part of this is that this diet is also devoid of....gluten. That's good if you are gluten intolerant. But you won't know if you really are gluten intolerant until you reintroduce it.

My problem with reintroducing "normal" food is that I didn't realize back then I really WAS gluten intolerant (had never heard of such a thing then.) I was not your typical allergic reaction type with GI problems. My problems with gluten are auto-immune...meaning they present as many things. I get migraines, fibromyalgia-like symptoms, arthritic type pain, swelling/bloating all over the body, unexplained weight gain, irritibility and this past summer MS-like symptoms. I also had hormonal problems back in the early 90 to mid-90s due to all this.

I would have never dreamed in a million years that gluten was my problem. It wasn't until I started showing signs of vitamin deficiency and severe auto-immune response I ever suspected gluten. It was only after talking to a friend with Celiac Disease it even dawned on me. I've been gluten free for over 2 months now and some days I'm 90% better and other days I am 50% better. It goes back and forth as I'm rooting out what else I'm reacting to besides gluten.

Based on when your symptoms started, you could do what I did and go on a strict diet rich in probiotics like I listed above and see if it makes a difference. Gluten may or may not be your issue. If it is, you could be like some of us who don't present with the Celiac-like GI symptoms once your gut has good bacteria back in it. But gluten intolerance which goes auto-immune on you is sometimes worse because it's a things that creeps up on you and you're very ill before you know what hit you.

Hope you find your answers,

FooGirlsMom