Frustrated And Really Pissed Off

[AntiGluten]

I've been "gluten free" for over 2 years now, ever since thanksgiving of 2001. I was diagnosed halfway through my senior year of high school. It seems like I still feel like crap (have a cloud in my head, feel tired or fatigued) more than half of the time. It comes and goes really. My symptoms are mainly extreme fatigue and irritability, as you can probably tell from the topic title. I'm 19 and still living at home with my parents and two brothers while attending a communtiy college. This past week my mom and I have been doing the elimination diet of only fresh meat, fruits, and vegetables to see if that will help (she has it too). The other day at the grocery store I found some celestial seasonings tea that I really like. It has ginko, licorice root, and some other stuff in it as well and it says gluten free right on the box. Tonight for dinner my mom and I had pork chops and vegetables stir fried, absolutly no way there could possibly be any gluten in it, and I had some of that tea. Then I went to my 6 o'clock three hour biology class. For the first hour of lecture and a quiz I was fighting to stay awake (mostly failing) then for the last hour of lab I was able to keep awake but my brain was foggy and i couldnt really think which made the lab a whole hell of a lot harder than it should have been. I just got home about 20 minutes ago and am feeling rather "irritated". My mom said she though it is probably the tea. This is just SO GDed frustrating!! I've been putting up with this for two years now and it seems like I'm still not better. I used the punching bag for a bit which helped a little, now I'm venting on this message board which is also helping a great deal. The only person I have to vent about this sh*tty disease to is my mom and after 2 years you kind of want someone else to talk to. You are the only people that understand what I'm going through. Anyways, I'm sorry this is so long and I apologize for the language, but thanks to anyone who took the time to read it and reply.

[seeking-wholeness]

AntiGluten,

I remember the feelings you describe very well! I also remember the feeling of being hopelessly and helplessly out of control as I lashed out at anyone in my vicinity, and the incredible effort it took to subdue those reactions. Whenever I was thwarted by anyone or anything, an image would pop into my mind of me collapsing in a heap on the floor, because it took energy to control my explosive temper, energy to seek an alternative resolution, energy to pursue the modified course of action--and all I wanted to do was SLEEP! Now that I have been gluten-free for a while, I can roll with the punches A LOT better! I hope you experience the same benefit after you track down and exclude the rogue gluten from your life!

On that subject, a couple of things come to mind. First, the tea COULD be the culprit. Celestial Seasonings makes about five teas that DO contain gluten, and what are the odds that they use separate equipment to manufacture them? About zero percent, I'd estimate! It's unfortunate, but just because a label states "gluten free" doesn't mean the product actually is gluten-free! Here's another possibility: have you contacted the manufacturer of the pork chops you ate to verify that there is NO gluten in them? Mass-produced pork and chicken are often injected with broth to make them juicier and tastier, and the broth may very well contain gluten!

Since you mention that your fatigue and irritability come and go, I would venture to guess that there are at least one or two sources of hidden gluten that you're still consuming on a regular basis. A diet of meat, fruits, and vegetables does sound like a good thing to try--as long as the meats turn out to be gluten-free! If you find that you need SOME grain products for balance, I would recommend Tinkyada or Rizopia brand Brown rice pastas, which are manufactured in a wheat-free facility. (They also cook up al dente and have a mild, acceptable flavor. My husband says he can't tell the difference between them and semolina pasta!)

I hope these suggestions are helpful to you, and that you begin to feel better soon!

[gf4life]

Hi AntiGluten,

It is quite possible that you are getting some gluten on a regular basis. I would suspect the meat as well. You may also want to have some carbohydrates in your diet, other that just fruits and veggies. Brown rice, white rice, maybe some corn bread (homemade so you know it is gluten-free).

Have you had any follow up testing since they diagnosed you? Usually it is a good idea to retest every year or so, since if you are still producing any antibodies then that means you are not 100% gluten free. You should also have your iron level checked periodically, especially if you are as tired as you are. I am very sorry you feel this bad. It can be extremely frustrating to have to live with a restricted diet, and then not even feel completely better. What do your doctors have to say about how you feel?

Have you looked into whether there are any support groups in your area? I don't know where you are in Texas, but I'm sure there have got to be at least one that is near you.

(Although I realise Texas is a big state!)

Here is a link to some support groups:

Celiac.com support group list

It might help to get together with other people in the same situation.

God bless,

Mariann

[LisaS]

AntiGluten,

Low blood sugar can also cause brain fog and irritablity. Try adding some whole grains like brown rice or beans. My favorite lunch is home made (gluten-free) chili. It keeps my brain clear and energy up all afternoon. Maybe there are some gluten-free canned chilis that you could try.

[AntiGluten]

I just wanted to thank all of you very much for replying. Hearing from others that have experienced the same thing is always comforting. I'm feeling a lot better today than I was last night. I still was tired and needed to sleep a little when I didn't want to, but not as badly as yesterday and without the irritability.

Sarah - I think I am getting some sort of hidden gluten from somewhere. That is probably the most annoying thing about this disease to me, is that you know you're getting gluten, but not the slightest clue where from. That's true what you said about the tea and the pork. I'm sure even if it says "gluten free", the manufacturers don't take cross contamination of there machines into account. Where can my mom and I get some of that pasta you mentioned? Before I was diagnosed one of my favorite things to eat was broccoli and cheese Pasta Roni.

Mariann - I eat rice noodle soup from Thai kitchen on a regular basis. It's rather tasty and also says gluten free on the package. I have had follow up tests. My first test was in Oct. of 2001 where my IgA=42 and IgG=130. Since then I was tested in Nov. of 2001, IgA=34 and IgG=118. Then in Oct. of 2003 my IgA=22 and IgG=40. They also tested Iron, thyroid, B vitamins, etc. which all came back normal. I think this supports the idea of getting rogue gluten from unknown sources. We live in a town called The Woodlands which is about half an hour north of Houston. We've been to several of the Houston Celiac support group meetings and have gotten a lot of info from them. Over the Christmas holidays, my mom asked the Houston support group leader for all the names and numbers of people that are from The Woodlands area with celiac and invited them all over to our house for kind of a Woodlands celiac group party. About six couples showed up and we also got a few calls from people that wanted to go but couldn't. It was cool meeting people from the area with celiac and we're gonna try to get together bimonthly.

Lisa - I eat rice pretty often and my mom makes chili sometimes. I like the chili a lot and haven't had bad reactions to it so maybe we'll start to make that more often.

One more thing I wanted to mention. My mom found this diet called the Specific Carbohydrate Diet (SCD) from a member of yahoo.com's celiac group. It sounds like a great diet for celiacs from what I've read. Open Original Shared Link

There's a link to the website and book about the diet. I would recommend taking a few minutes and read some to see what you guys think about it. My mom and I ordered the book and will be starting it next week. I really hope this helps clean out my intestine and brings my energy back up. Anyways, sorry that this reply is so long and thank you everyone from replying back to me, I truly appreciate it.

Lee

[kejohe]

Lee,

I can't say that I know how you feel, but I can sympathize. My son, now 3 y/o and he is just becoming aware of the fact that he can't have what all the other kids have. I try my best to give him foods that look and taste like the other kids foods, but then I worry that he will get confused as to why he can't share, or accept when the other kids want to share. I do understand your frustration. Everytime I pick up a box of food, and look at the label, I cringe when I see all the things I can't get because they have gluten in them.

He has had so many accidents from getting into things at school that he shouldn't have, that I seriously considered home schooling for a while. I even supply his school with paint, playdough and pasta made with rice, so that he can still do art with the other kids.

I think that I am finally getting the hang of this gluten-free diet, but every now and then when he gets sick, I think what the hell happened this time?!?!?! What have I done to my son this time?!?!?

Anyway, I just wanted you to know that I am sorry for your pain and frustration, and that while I don't feel the pain myself, I feel it for someone I love deeply and that can be as bad. I hope that you feel better soon and that you can pin down that source of hidden gluten that must be in there somewhere.

Good luck and take care not to get to discouraged, sometimes life throws curves and puches we aren't ready for, but that doesn't mean we can't swing and hit back. Someday there may be a cure and we can only take care of ourselves until then and hope that day comes very soon.

[Guest aramgard]

Lee, Another thought about the brain fog and dizzy feeling. I've noticed since being gluten free, if I keep my electrolytes in balance I feel much better focused. You might try adding a banana a day and if not try a small glass of pedialyte or take a good multiple vitamin with trace minerals. I just got over that miserable flu and my electrolytes were so bad, that my husband got me pedialyte and bananas and it made me feel better within an hour. It might be worth a try. Shirley

[gf4life]

Lee,

You are right that you are probably getting hidden gluten somewhere on a regular basis. After two years your antibody levels should really be at zero. If you are still producing antibodies, then you are still getting into some gluten.

That is really neat about the Christmas party. It sounds like you had a lot of fun.

Many people have recommended the Specific Carbohydrate diet, and it is very easy to adapt to gluten-free. As for the pasta, there are many places online that you can get them, or if you guys have a Whole Foods or another kind of health food store around where you live, they sell them there. I highly recommend Tinkyada brand.

If your mom is a member of the Yahoo Group Silly Yaks, then she can access a link from their site for the Gluten Free Pantry, and a portion of what she spends goes back to the Silly Yaks site and gets donated to Celiac Research. There are also links here at Celiac.com to good online gluten free shopping.

I'm glad you are having a better day today!

God bless,

Mariann

[seeking-wholeness]

Lee, I get my rice pasta at Whole Foods Market or my little local health food store. There is even a regular supermarket in my area that stocks Rizopia spaghetti! I hope you find a supplier in your area, and I'm glad you're feeling better today!

[ROYAL BLUE]

Mariann, I read your comment about the antibodies should be at zero if truly gluten free. Do you know if doctors have different opinions on this? The reason I am asking is, I asked my sons doctor about getting the tissue transglutiminate test done again to see if his antibody levels have dropped any since going gluten-free. I also asked if the level read 10 (for an example) would that mean he is still getting gluten from somewhere? The DR. said NO, 10 is within normal range, the levels do not have to be or probably never will be at zero.

I am so confused about all of this. Anyway, after finding out my 6 year old has celiac, I had my 3 year olds blood tested. His came back at 8 (within normal range). From some things I have been reading, he has been producing antibodies for a reason. Dr. again said no he is fine. I said, should he be tested again at a later date to make sure the numbers don't change. The doc said no, I'd wait until he shows symptoms before being concerned. That sounds kind of idiotic to me, he could be 40 before he shows symptoms.

Thanx

Tracy

[gf4life]

Hi Tracy,

I have not found two doctors in my area who agree on anything in regards to Celiac Disease. I have found many people on this site who have gotten their antibody levels down to zero, but most doctors are happy to have them below 20! I personally never showed positive on the bloodtests, even though I do have the disease. There are just too many variables with the bloodtests. I had a tTg level of 9, and still had celiac disease, and tons of symptoms.

This is my opinion though, (and I am not a doctor) but common sense seems to say, that if you know your body can't tolerate gluten, and you are developing antibodies (even a low level) then that seems to say you are consuming at least a little bit of gluten somewhere. Since if you were not getting any gluten then you would not be producing antibodies against it. Also, according to my children's pediatric GI , the tTg test is only accurate in detecting Celiac Disease if they use human tissue transglutiminase, and many labs use animal tissue transglutiminase (which has a higher rate of false negative readings). So depending on which lab you went to, your 3 year old's test may not be very accurate. You may want to find some information online to support this, and take it in to your doctor. It would be much better for your child's health if you knew early on that he has celiac disease, rather than wait until he has noticable symptoms. I would hate to see him have to get sick, when he could just eat the same as his sibling, and stay healthy.

My kids are 9, 7, and 4. I am currently waiting for their blood and gene test results. They all tested negative on their first tests, except for the IgG gliadin test. since those were done at a regular lab, their new doctor ordered the tests to be redone by Prometheus Labs, which is one of the most recommended labs for celiac disease. They are very skilled at the tests, use human tTg, and also check for IgA deficiency. If the blood tests for Celiac are negative with their tests, they automatically run the gene test on the blood. My kid's doctor says he only uses them for Celiac testing, since he wants to know he can trust the results. I want to know I can trust the results, too!

I hope you can find out for sure if your 3 year old has celiac disease or not.

God bless,

Mariann

[corryne]

hello! my name is corryne. i am 29 ys old and found out last april that i am gluten intolerant. this was after years of testing for just about everything, and suffering from basically every symptom possible in one form or another, but as I am finding out, like most people my doctors kept searching for other answers. Since I found out that I was gluten intolerant and have tried extremely hard to follow the gluten free diet. but it's not easy. i have a busy schedule and have had to change all my eating out habits and grovery shopping habits. but sometimes i can tell by how i feel after eating that some gluten must have snuck into my diet. i am realizing that i have to stay away from processed meats and almost everything in a restaurant it seems like becuase i don't know what they are using to male stuff. However, this i don't mind, my main problem is that I have a HORRIBLE sweet tooth. i love sweet food, and i don't really mean chocolate. I mean desserts: apple pie, brownies, cupcakes, cakes and of course chocolate chip cookies. I went 3 whole months without anytthing baked, but then last week I broke down and ate a brownie bottom pir from bennigans. I only ate half of the brownie, but I still ate it. I know I need some kind of advice of either how to stop myself from eating it or I need some other sweet things I can eat as an alternative. Also I would like ides of some things ot eat at like bsaic restaurants like Bennigans, Fridays, Applebees. I appreciate any help anyone can offer me. I feel so much better when I have no gluten I just have to get better and completely eliminating it from my diet. PLease help!

[ROYAL BLUE]

Mariann, Thanx for your input on the subject. I get more answers from people on this board than I can get from my sons Drs. Atleast everyone is helping me ask the correct questions.

One thing that really puzzles me is, here in Canada they only do the Tissue Transglutiminase test, and then biopsy. Should I be requesting the other blood tests also?

Thanx again

Tracy

[Guest aramgard]

Mariann, Have you read the recent article in Celiac.com about the anti-tissue transglutaminase scrreening technique developed like Dr. Fine's test but even more sensitive? It looks like Italian researchers are taking Dr. Fine very seriously. Shirley

[YankeeDB]

Hello Antigluten,

Thanks for posting this as it very accurately expresses the frustration that goes with this disease. It seems like it's 2 steps forward, 3 back, 5 forward, 4 back, etc. etc. Maddening!

I was officially diagnosed one week ago and immediately recognized it as good-news-bad-news! Good because I finally know the source of my years and years of ever increasing fatigue (not "getting old", not "depression", not "just the way I am", not menopause) and bad because of the challenges of the diet.

I'm just embarking on the task of explaining this to friends including why I can't just "scrape the breading off the fish" or take the skin off the KFC. People tend to think it's like any diet where you can get away with cheating a little bit. Fortunately, my friends want to understand so that helps tremendously. I wish there was a phrase I could use that would get the point across--so far, all I can think of is something like "Even a small amount of gluten is poison to me and gluten is common in American processed foods." I'll have my first post-diagnosis restaurant outing in a week--such fun.

P. S. Antigluten, cool car!

[GFdoc]

Hi - this is in reply to corryne. There are lots of great gluten-free mixes you can get (try Gluten Free Pantry's brownie mix - I make up a batch, cut into squares and freeze - they are addictive and AMAZINGLY good! in fact, I serve them to nonceliacs, who compliment them) You should learn to bake on your own - the mixes are really good, but if you want to experiment, I made Toll House chocolate chip cookies yesterday using Bette Hageman's gluten-free featherlight four (I added only xantham gum to the original recipe) and the cookies were a huge hit at the superbowl party we were at (and I was the only celiac there).

As for restaurants, I would recommend staying away from Bennigans-like chain restaurants - they usually don't make their food fresh - so you can't ask for modifications on any meals. You are better off going to a better/more upscale place that makes everything from scratch. It's worth the extra bucks. Try a fresh seafood restaurant or a steak place. Good Luck.

Sara

[Guest jhmom]

corryne:

I agree with GFdoc the Gluten Free pantry Brownie mix is OUT OF THIS WORLD I just made a batch last night they were very thick and YUMMY!!! My non-celiac husband and son LOVED them too!

ALso Outback Steakhouse has a gluten-free Brownie dessert with ice cream and whipped cream, its good but not as good by itself as the one mentioned above.

[AntiGluten]

Hi everyone. Thanks again for replying.

Shirley - Thanks for the electrolyte tip. I've been eating bananas more frequently and also got a big bottle of gatoraide in the fridge to drink, it's supposed to have electrolytes too. It seems to be making a small difference.

Corryne - You don't have to worry about lack of brownies, cookies, cakes, etc. on a gluten free diet. There are plenty of great mixes out there. The gluten free brownies are excellent, in fact a lot of my friends have said they like them better than traditional brownies. One thing I like to do is take a brownie and put it in the microwave for little bit to make it hot, then put a scoop of chocolate chip ice cream on top and let it melt a little. Also, there is a chocolate chip cookie cake mix that I really love. We've made it a few times. Pamela's chocolate chip cookies are great in milk too.

Mariann - The Prometheus lab is definately the best. My mom had taken my great grandmother to our doctor for classic celiac symptoms and he's tested her twice. They sent the blood to Quest diagnostics here in Houston, and they said it was negative, which I think is BS. My Aunt has also had her family tested since finding out what my mom and I have, and one of her daughters came back positive, then got tested again and was negative the second time. That kind of pisses me off. She doesnt have any symptoms yet except for stomach aches every now and then, but my Aunt said she would keep an eye and get her tested in a couple years or sooner if symptoms occur, she's still pretty young though.

YankeeDB - I'm glad that you found out that you have celiac disease and know why you've been feeling bad. The diet really isn't bad. It's not. The only thing I'm frustrated with is all the hidden gluten and everyone you meet not having a clue what celiac is. It's good too that your friends sound supportive. Luckily my friends are quite understanding and accomodate when they can. I still miss going out for pizza with them though. And thanks for the compliment on the car. I wish it were mine. It's actually a Ferrari Enzo. My friend and I saw it last september at Ferrari Challenge at Texas World Speedway. It's a $660,000 car, very fast.

My mom and I got the "Breaking the Vicious Cycle" book in the mail today so we're gonna start the SCD soon. I really hope it helps clean out my system and lets my intestine heal 100% (which I think it hasn't even in 2 years, I was in pretty bad shape). Even if I have to stay on this special carbohydrate diet, I won't care as long as I have energy again and can go a full day without dozing off or feeling clouds in my head.

[scribble]

I don't really have a reply for you, I just need a little help. How do I post a message on this board. Call me crazy, but I can't seem to find a link/button for new posts. Anyway, I'm currently on a 14 day gluten free trial, and I have a few questions.

thanks,

Scribble

[Guest jhmom]

At the top of the page on the right you will see a button "New Topic" click it and away you go....

[gf4life]

Shirley- Thanks for pointing out that article. I read it and was very glad to see that more researchers are picking up on the fact that the intestines is the place to test for antibodies! Again, thanks.

Corryne- You certainly do not have to live without your sweets. You just need to make your own gluten free ones. My kids love the gluten-free brownies that I make. I use a box mix and I have tried a few brands, they all seem to be good. The trick is to not eat too many of them! You should certainly try it. With such a restrictive diet, you should not deprive yourself of occasional treats, especially with so many good gluten free products available to us.

Scribble- were you able to post a new topic? The "New Topic" buttons are located on the top of the page and the bottom of the page right next to the "Add Reply" button.

[noglutenallgood]

In response to AntiGluten going on the Specific Carbohydrate Diet (SCD), I applaud you! This diet is even more difficult than a gluten free diet, but I have read nothing but great things about it. I would really like to know if it helps you. One of the books that Elaine Gottshall references in Breaking the Vicious Cycle, is Management of Celiac Disease by Drs. Sydney and Merrill Haas. It's an old, but very interesting book; it was published by two doctors a father and son in the 1950's. They had remarkable success with the SCD. This book is out of print and difficult to find, but worth it.

[johnnygluten]

BEWARE THAI KITCHEN (brand) SOUPS.

Pics: Open Original Shared Link

I've been burned several times by "Thai Kitchen" soups.

Some of them say "Gluten Free", Some of them say "MSG FREE", and some of them say both. I've gotten VERY sick several times after eating the ones that only say one or the other and list "Natural Flavor" as one of the ingredients in the flavour packet. It can make things very difficult, especially if you're not doing all of the shopping yourself.

I'd avise that you **always** be wary when a supposedly safe product has "Natural Flavor(s)" listed in the ingredients... I'm new at dealing with all of this, and I am NOT a doctor, but I've read that a *LOT* of people with Celiac disease are also VERY allergic/sensitive to MSG (as I am).

Johnny Gluten

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[sportnut]

Hi everybody. I was diagnosed about 2 1/2 years ago and it's been a constant struggle ever since to stay gluten free. I used to be on the message boards every day but have been lax about it lately. But I've been having more problems than usual lately and wanted to see if anyone would share if they're having the same problems.

Which is horrible mood swings. I go from being overly jealous over anyone not having celiac disease, to being angry at my boyfriend for no reason at all. It's starting to effect my relationship and I'm sick of it. Does anyone else out there have uncontrolable and frequent mood swings? If you are willing to share some experiences it would help a lot. I'm glad I'm back. I"ll check in a couple of days to see what anyone has to say.

[Guest Libbyk]

Lee, sport nut-

another thought on the fog-brain thing- do you snack a lot? I find i have to eat AT LEAST every two hours, or I get stupid, cranky and irrational. (sound familiat to anybody?) Anyhow, the things that get my though are fuji apples in peanut butter (or almond butter- even yummier) and string cheese. I eat apples and cheese or nuts at leat once a day and when I am on the road, sometimes they are my stple food. And you can take them into most (non-lab) classes.

sport nut- When I got diagnosed, my boyfriend was excstatic. I am a pretty good girlfriend for the most part, but went "crazy" once in a while. we both have big hopes for our gluten-free future. the mood swings can be breath takingly swift, but now we know that most of the tiume, a snack wil head things off at the pass. I am a little worried that I will get big as a whale by doing this. But, if I eat, and 30 minutes later, I am still mad, THEN we get into it. if suddenly things are all better, then we know thta it was my belly, and not him being a jerk. (This is nearly always the case. ) did I mention I am hypoglycemic too?

peace,

Libby