On Gluten Free Diet-need Help

[shellbean]

I have been on the gluten free diet for about a week now. It seems like a miracle so far. All of my pains have disappeared and I feel so much better. My symptoms have decreased dramatically. I have been eating alot of the same foods starting out until I can figure out what is safe to eat. I am just amazed at how this diet has helped my problem. I was not diagnosed with celiac by a doctor - I was one of those they said "it's all in my head" because they couldn't figure out what was wrong with me. I have gone the route of self diagnosing using the diet. I tested myself a couple times by eating a piece of bread and WHOA! I was in agony. So I have no doubt in my mind that I have celiac. The only things I notice with my body now is sometimes after dinner (all gluten free things I think!) I have "dumping" syndrome where I have to immediately run to the bathroom with D and big intestinal cramps. It hasn't happened but twice so far but I don't know what could be causing it. Also, I have a small rash that flares up on the inside part of both of my elbows every so often. I just read on one of the threads that there is gluten in all sorts of things besides food. Even though the food I am eating says gluten free or I have verified it with the manufacturer, I must be getting gluten mixed in somewhere wouldn't it seem? Once you go gluten free, does even a very small fraction of gluten cause problems? Another thing I notice is I am always hungry. I seem to always eat but I feel like I haven't eaten anything. Is that normal starting out on the diet? I guess I just have to work out the kinks. Other than that, I am so relieved that I have found my problem. I feel ten times better now than I did before the diet. I appreciate any advice.

[Guest cassidy]

This all seems normal to me. I felt better after a few days but I kept feeling better and better in the weeks tha followed. In the beginning, sometimes people react to safe foods. Your system needs time to heal. I would stick to bland, safe foods that are easy to digest and give your system time to calm down.

There is gluten in things other than food. You will likely go through the process of checking all cosmetics, household items, medications and think you have it all, and then find something else. It is completely normal.

Also, be careful for crumbs - things like toasters, shared pots and pans, butter and peanut butter you used when you ate gluten in the past. You can find threads on all this stuff. Cross contamination is a big issue.

Also, it does seem like people are more sensitive to small bits of gluten when they go off of it. My guess is that we would have always gotten sick from small amounts but that we always felt bad before from eating large amounts that we had no idea.

Some people do get very hungry. I would listen to your body and give it what it wants. I wouldn't worry about losing/gaining weight at this point. Just do what it is telling you to and it will all work out.

Most people get frustrated, have setbacks and gluten themselves sometimes. This is completely normal, so don't be too hard on yourself.

Glad you figured out what is wrong. You will likely be amazed at how much this changes your life. Hopefully, you will feel so much better. Good luck.

[Guest nini]

you are still in the really early stages of healing and getting the hang of the diet, so, go easy on yourself! You are bound to make some mistakes but eventually you will figure out MOST of the hidden glutens... Every so often though one will creep up on you where you least expect it.

My most recent accidental glutening comes from cheap GENERIC coffee... I found out the company that manufactures it uses flour on the belts to keep the belts moving and not sticking... GRRRRRR... my hubby was trying to save money and was like "it's just freakin coffee, there's no gluten in it" and I listened to him... boy was that a mistake! I've been drinking a cup every morning for about 3 weeks and have been feeling like utter crap the entire time. I should've got the clue when every morning after the first sip I threw up stomach acid for about 10 minutes... AAAAAACK!!!! (and I've been gluten-free for 3 years now, so I should know better)

Anyway, stick with mild naturally gluten-free foods for a while, don't try to do a lot of substitute products until you are healed (at least 6 months to up to 2 years average) also, you may be having problems with dairy initially because until your villi are healed, there is no way for your body to digest Lactose.

Good luck and you are off to a great start!

[loraleena]

Make sure all comsmetics,lotions, and shampoos are gluten free. Also watch out for dairy. This often causes problems in celiacs. Try not to eat to much processed food (even if gluten free) and try not to eat the same things all the time. Your digestive system has a long way to go to heal. Good luck.

[shellbean]

Thanks to you all for the advice! At least I know I'm on the right track. Thanks Nini for getting me started with the newbie survival kit. That was a huge help. I am going to cut back on the dairy and see if that helps too. I just ate a small bowl of gluten free rice with a small amount of sugar and butter and the only other things I ate today were a small bowl of fruity pebbles, a plain hot dog (no bread or anything), a carrot with gluten free ranch dressing and applesauce. Now my rash on my elbows has flared up again. And it seems to be on my neck too. Maybe I ate something yesterday that triggered it. Maybe it's my makeup or bathing soap....I'll have to read up on all that. I have LOTS to learn!! Thanks again for the help!!

[tarnalberry]

I have been on the gluten free diet for about a week now. It seems like a miracle so far. All of my pains have disappeared and I feel so much better. My symptoms have decreased dramatically. I have been eating alot of the same foods starting out until I can figure out what is safe to eat. ... The only things I notice with my body now is sometimes after dinner (all gluten free things I think!) I have "dumping" syndrome where I have to immediately run to the bathroom with D and big intestinal cramps. It hasn't happened but twice so far but I don't know what could be causing it. ... Once you go gluten free, does even a very small fraction of gluten cause problems? Another thing I notice is I am always hungry. I seem to always eat but I feel like I haven't eaten anything. Is that normal starting out on the diet? I guess I just have to work out the kinks. Other than that, I am so relieved that I have found my problem. I feel ten times better now than I did before the diet. I appreciate any advice.

A week isn't very long. (Many of us have reactions to gluten that last that long! :-) ) You may find things changing a lot (good/bad, back/forth) in the weeks to come, but stick with it!

You may find that, after being gluten-free for a number of weeks, you may find you are more sensitive to small amounts of gluten, but not *everyone* finds that to be true for them.

As for always being hungry - are the foods you're eating high in carbs, particularly simple carbs? You may be getting a low blood sugar reaction that's keeping you hungrier more often, and that could be helped by 1) better carbs (complex, higher in fiber/protein/fat), 2) more protein, 3) more fat. Of course, if you had intestinal damage and are now healing and starting to absorb food, your body may be simply demanding a lot more nutrition than it used to, so eat healthy!

[jknnej]

You might also be lactose intolerant. Most Celiacs are, at least for awhile, until the intestines heal. And, once you go off gluten, you start to notice other foods your body doesn't tolerate.

Yes, I was always hungry after going gluten-free. You'll get used to it.

Check all shampoos, laundry detergents (especially with the rash), make-up, soap, toothpaste, etc. Anything that touches your body.

I bought my own toaster and just a few pots and pans that only I use to avoid cross contamination.

Watch eating out-no matter how careful you are there is always a risk because you can't control the kitchen.

Write back if you need some tips on gluten-free products....we have all been through this and we can help you.

Glad to hear you're feeling better! give it some time....before going gluten-free I was sick all of the time.

I can honestly say now that I haven't had D for over a year! Amazing! the longest in my life without it!

[Alvina214]

You know, I have been wondering myself what it is NOW that I ate...seems like I have been feeling better, but not totally "well" like some small thing is still bugging me. I have been dealing w/ tingling in my hands/fingers lately and wondering if that is Celiac related...

I have been calling/emailing companies little at a time...drug co. to find out if I can take a med. that I need, etc. Calling Bonnie Bell to find out my all time favorite flavor chapstick has gluten, thank goodness they carry another kind that is gluten-free!-Ran out and bought 6 tubes of that.

Just dealt with a co. that provides my DDS w/ toothpaste...after talking w/ my DDS he recommended me looking up the website or calling them. I finally got around to it, now that my appt. is NEXT MO. and this co...customer service rep was so rude...they can't talk to consumers directly...they only talk to the DDS personally. I called my DDS (after emailing the President of the co. and telling him how rude/wrong their policy is and what true customer service really is) and he was shocked and said he shared my thoughts on how "helpful" they have NOT been. He called them and found of the 3 flavors they carry cherry, mint and pinacolada, only the pinacolada they KNOW is Gluten free, they are going to get back to him about the other flavors. All that, for a flavor I don't want! hehehehe

I guess my frustrations are normal but I haven't given up on the hope that MINT may be a possibility.

I just found out a person I've know for a yr or so has Celiac, she's had it since 3yrs old, her mom and granny have it. That sounds easier to deal w/ than having to kind of start from A.

I remember in my first mo. going to Steak n' Shake...ordering a double cheese burger, no bun and putting katsup on it...half way throught scraping off the katsup...and thinking...man, no wonder that was so good...I forgot I can't have katsup. After finishing the burger...realized I ate the cheese that is processed too...at that moment I just wanted to cry. Also after reading EVERY label of any cereal that I liked...and finding nothing was ok for me. That was a pretty desilute time too...I think my poor boyfriend...reading labels w/ me must think...poor gal.

Things are better, even if I am not feeling GREAT, I at least don't have cramps, D, or Const, bloating, gas, or nausea anywhere as often. I always try to be thankful for what I have, and try to look on the bright side.

I was diagnosed as a young child w/ wheat, flour, chocolate and carmel food allergies. Dust, mold and mildew, as well as pet dander were also allergans. I started eating "reg" foods as I got to be a teenager. I am 33 and was just diagnosed this past Dec. and saw a Dietician, and have attended 1 support group meeting. I must say I'm glad I told my Dr. to test me further, cause I "didn't" have the FLU...for 3 weeks. I'm glad he recommended a GI Dr. quickly when they found nothing in my blood, stool or urine tests. I am glad the GI Dr. sat down and explained the answers to every question I have had-like he had all the time in the world for me. My Dietician was very genuine and helpful with a list of possible brand names of items I would most likely find in foods I could eat, examples of boxes of foods to show food items/ ingredients to look out for, and for giving me her phone number to call anytime w/questions. The first 6 mo. they want me on a strict 100% gluten-free diet; not even some very possible/questionable things. (Ex: canola oil, white or distilled vinegar, red dye #40, vitamin E) The support group I went to was a wake up call for the depressing state I was starting to get into. I was complaining about a limited diet and crapy length of time that it took for them to figure out what was wrong w/me. (4-6mo.) I found out later I was sitting next to a lady who it took 5yrs for diagnosis...and she almost died, ended up having seizures and still is epileptic to this day; even w/ gluten-free diet. I felt like someone slapped me in the face...and man have I just been happy to be me. I have far fewer things to complain about, and much more appreciative for my situation. I am still finding my way but still need guidance and support like we all do.

Thanks for sharing, hope you find something in my reply helpful. I have found that if I find out someone has Celiac, I have this urge to want to compare notes and start talking about favorite foods and helpful hints.

Good Luck to you all!