Please Help....getting Very Frustrated With Continued Symptoms

[newceliac]

I have been on a gluten free diet since being diagnosed in September 2007. I felt good in the beginning and then had a few episodes where I was accidentally glutened.

I have been trying so hard but it seems I never go longer than a few days at a time of feeling good without having an episode.

The episodes I have been having the past few days are AWFUL and I am getting aggravated and depressed because I am trying so hard and it is frustrating to not know what I am doing wrong or what the problem is!!!!!!

Off and on for the past few days,I have had gas and terrible lower abdominal cramping and pain. I am also VERY constipated and it seems that I can never to anything to help with regularity. I can sit on the toilet for a while with no success. I am also so bloated.....looks like I could be pregnant. Could something other than gluten be causing this? I have tried to be lactose free also but I may overlook some items that have dairy. I did go on a binge about a week ago where I ate too many hershey's kisses but can that cause this much pain? Would these contain dairy?

I am getting so down right now because I am working so hard to get better and I still seem to have bad episodes....this one being one of the worst. It seems like I could eat what I want everyday and feel the same way I am feeling now. There is no reward for me presently to be gluten free if I am still feeling bad.

Please give advice to this awful pain and cramping! Thanks in advance.

[Jodie2DQ2]

Hi, I am sorry for your frustration. I too get frustrated. My first advice to you,from my own recent experience, is to double check EVERYTHING you are eating. I just realized that the Oreida fries I was eating contain Gluten.NOTHING is stated on the fries package that would have alerted me. Contains Soy..was all that was on it. I contacted the company after I kept getting sick..thinking that something else was going on because I just knew I was completely gluten free. Sure enough the "Crispers" contain gluten. Also...my syrup I was using I learned (Mrs. Buttersworth) contains Barley? I was eating gluten free waffles with this syrup almost every day. I kept thinking just like you that SOMETHING else was going on. And I am pretty sure that the kisses contain dairy.I too have issues with constipation and I tried this Renew Life CleanseMore for occasional constipation. Works great! So I have actually gone back to the basics of eating ONLY what I know for sure is Gluten free and not relying on labels. I hope this helps. Jodie

[GlutenWrangler]

Going gluten-free is a tough learning experience. You need to be vigilant in all aspects of food preparation and eating. Right now I'm willing to be you are still dealing with gluten contamination in some way or another. Hidden gluten is everywhere, and it is something you need to learn how to avoid. Check everything that you eat, and if you're not sure, look it up online or ask someone here. If you are 100% positive that you are completely gluetn-free, I would guess that you have some undiagnosed food allergies or intolerances. If you suspect this, talk to your doctor about it.

I hope this helps.

-Brian

[hathor]

First of all, make sure you aren't getting gluten. You do check out any medicines, supplements, personal care items, etc., right? You also read the ingredients of everything you eat and check out any possible sources of hidden gluten (celiac.com has a list)?

I ask the latter question because you say that you have been trying to avoid dairy, but you may have overlooked some items and indeed ask about Hershey's Kisses. If you were reading labels, well, you would know. (Certainly the milk chocolate variety has dairy; I can't find a list of ingredients for the dark chocolate type, but something sticks in my mind that they put dairy in their alleged dark chocolate. Haven't read a label recently because I have been sticking to fair trade dark chocolate.)

Your problem may be casein, rather than lactose. For this, you can't rely on "lactose free" labels.

Dairy can cause the sorts of problems you are experiencing. All I can suggest is truly cutting out casein and seeing if this makes a difference after a fair trial.

Soy is another possible and common problem.

[newceliac]

Yes, I am very diligent about checking labels for gluten. I am sure that I may overlook some hidden sources of gluten, just like many new celiacs do. I knew that dark chocolate hershey's kisses were gluten free so that is why I did not check the label.

I have bought new pots, etc. and tried to do everything possible to be gluten free and yet, I still have periods when I feel bad. Therefore, it is frustrating to me.

I also do have the list of the safe and unsafe ingredients from this celiac.com. However, like stated, it is very easy to always know when someone "hides" gluten in their product.

All, I want is to feel better most of the time not just a few days in a long span. At this point, I feel like I may have to eat chicken, fish, rice, fruits and vegetables my whole life.

I was just wanting to know if other people shared the experiences I am feeling or if it was normal to have these digestive issues. Also, I have no one to talk to because I do not know any celiacs and my family and friends do not truly understand. So, I thought I could turn to this forum to get advice.

[rogihome]

I have been on a gluten free diet since being diagnosed in September 2007. I felt good in the beginning and then had a few episodes where I was accidentally glutened.

I have been trying so hard but it seems I never go longer than a few days at a time of feeling good without having an episode.

The episodes I have been having the past few days are AWFUL and I am getting aggravated and depressed because I am trying so hard and it is frustrating to not know what I am doing wrong or what the problem is!!!!!!

Off and on for the past few days,I have had gas and terrible lower abdominal cramping and pain. I am also VERY constipated and it seems that I can never to anything to help with regularity. I can sit on the toilet for a while with no success. I am also so bloated.....looks like I could be pregnant. Could something other than gluten be causing this? I have tried to be lactose free also but I may overlook some items that have dairy. I did go on a binge about a week ago where I ate too many hershey's kisses but can that cause this much pain? Would these contain dairy?

I am getting so down right now because I am working so hard to get better and I still seem to have bad episodes....this one being one of the worst. It seems like I could eat what I want everyday and feel the same way I am feeling now. There is no reward for me presently to be gluten free if I am still feeling bad.

Please give advice to this awful pain and cramping! Thanks in advance.

[rogihome]

I have been on a gluten free diet since being diagnosed in September 2007. I felt good in the beginning and then had a few episodes where I was accidentally glutened.

I have been trying so hard but it seems I never go longer than a few days at a time of feeling good without having an episode.

The episodes I have been having the past few days are AWFUL and I am getting aggravated and depressed because I am trying so hard and it is frustrating to not know what I am doing wrong or what the problem is!!!!!!

Off and on for the past few days,I have had gas and terrible lower abdominal cramping and pain. I am also VERY constipated and it seems that I can never to anything to help with regularity. I can sit on the toilet for a while with no success. I am also so bloated.....looks like I could be pregnant. Could something other than gluten be causing this? I have tried to be lactose free also but I may overlook some items that have dairy. I did go on a binge about a week ago where I ate too many hershey's kisses but can that cause this much pain? Would these contain dairy?

I am getting so down right now because I am working so hard to get better and I still seem to have bad episodes....this one being one of the worst. It seems like I could eat what I want everyday and feel the same way I am feeling now. There is no reward for me presently to be gluten free if I am still feeling bad.

Please give advice to this awful pain and cramping! Thanks in advance.

[FootballFanatic]

All I can say is me too.

Your story is almost identical to me.

The only advice I'm getting now is that it's anxiety symptoms and to calm down or that I was misdiagnosed with celiac diease.

I only the same meals cooked the same way. All of my meds have been checked...Cosmetics, coooking utensils. Everything is new and gluten free

[loco-ladi]

When I first started the gluten-free diet I had an issue not with dairy as I went dairy free for the first little bit then just recently started adding it... (am now up to dairy once a week with no ill effects to speak of)

My issue was "oil" didn't matter what kind it was but it hit my tummy like a rock and still have to go "oil lite" about a handful of chips is all my tummy can hadle without causing a big stir.

But I also suggest double check everything at this point, all food, meds, lotions, soaps.....

lets not forget the hubby kiss can cause CC (just ask mine he will tell ya, lol)

Also dont be afraid to expiriment with herbs while your cooking that boring bland meal you know is safe...... add a few pieces of pepperoni while cooking or try a new herb for flavoring.... just a little chive on chicken cooked with a few pieces of pepperoni is delightful! (hormel pepperoni is gluten-free)

[sneezydiva]

I have been on a gluten free diet since being diagnosed in September 2007. I felt good in the beginning and then had a few episodes where I was accidentally glutened.

I have been trying so hard but it seems I never go longer than a few days at a time of feeling good without having an episode.

The episodes I have been having the past few days are AWFUL and I am getting aggravated and depressed because I am trying so hard and it is frustrating to not know what I am doing wrong or what the problem is!!!!!!

Off and on for the past few days,I have had gas and terrible lower abdominal cramping and pain. I am also VERY constipated and it seems that I can never to anything to help with regularity. I can sit on the toilet for a while with no success. I am also so bloated.....looks like I could be pregnant. Could something other than gluten be causing this? I have tried to be lactose free also but I may overlook some items that have dairy. I did go on a binge about a week ago where I ate too many hershey's kisses but can that cause this much pain? Would these contain dairy?

I am getting so down right now because I am working so hard to get better and I still seem to have bad episodes....this one being one of the worst. It seems like I could eat what I want everyday and feel the same way I am feeling now. There is no reward for me presently to be gluten free if I am still feeling bad.

Please give advice to this awful pain and cramping! Thanks in advance.

Are you eating a lot of fat? When I started eating gluten free, I followed South Beach diet, phase 2, which is an essentially high protein diet, and while not high in unhealthy fats, contained a lot more fat than I normally ate. And when I ate a fatty meal, the fat would "go right through me" so to speak. When the celiac disease destroys your villi, your fat absorption is impaired which is how some of the vitamin deficiencies, like Vitamin D come about. So if you are positive you don't have any cross contamination, I would try eating more fruits and veggies, and less meat and fat. Give your villi time to heal.

[bakingbarb]

I have been off of gluten since the end of October and there are times when I have the same problem. As far as milk, I still stay away from it mostly. If it is baked into something I can handle but you won't catch me drinking a glass of milk.

There are days when I get sick and cannot figure out what from and then there are days when I know what it was (or where I ate at!).

The thing that everyone has repeated to me and what I have read is that it takes months to heal and feel better.

I felt better but still very tired and get achy. I know that there is no way my body has healed in less then 2 months. Wow I just realized it is less then 2 months, it feels like it has been so long.

Anyways if you had any number of other diseases you would not expect to feel better this quickly nor would you expect something else to heal this fast. Symptoms don't go away overnight.

My daughter eats no meat and has been anemic for years, it has taken about a year on a special supplement for her to get better. Point is it takes time.

I am so frustrated at how tired I still am. I used to think I was super-mom. HA sounds funny but it is true. Now, not even close. I look forward to better health though. I can hardly wait to feel healthy.

[Fiddle-Faddle]

May I suggest that you post a list of what you are eating on any typical day (breakfast, lunch, dinner, and snacks, everything)?

That way, maybe one of us can figure out if it is a specific ingredient or if it's a dietary balance sort of thing.

I also wanted to ask about the Ore-Ida Fries--that might be worth a specific post to alert others! Do ALL their fries contain unlisted gluten???

And I was wondering why you are avoiding lactose? Seems to me that you should be avoiding all dairy (casein) rather than just lactose.

[Marlene]

I have been on the gluten free diet since July 1, 2006 and casein free since September of 2006. My blood tests came back negative for Celiac and I never had the biopsy. I was diagnosed through Enterolab. While I did improve somewhat after cutting out gluten and dairy, I am not better. I did the whole scrutinize every label, make sure everything is gluten free including personal care items etc etc.

I have finally figured out that my problems come from a dysfunctional liver and pancreas. I just don't have the enzymes that I need to digest food and my liver gives me constant grief. I have found that avoiding foods which are difficult for the liver to digest (you can find lists on the web or try to get hold of the liver book by Dr. Sandra Cabot -- also on the web) has helped me. I am also experimenting with different digestive enzymes to try and find the right one for me. Just because something is gluten/casein free doesn't mean that it won't bother your digestive system. I found this out the hard way.

Personally I believe that if you don't have Celiac, there is something else going on which is causing your problems. I don't even think I've gotten to the bottom of what is really wrong with my body at this time but I will continue to work away at it until I do. In the meantime, I am doing what I can for my liver/ pancreas. BTW, chocolate is one food that really causes me problems -- it's very hard on your liver. I ate Hershey kisses this past weekend too and I am paying for it now.

I would encourage you to keep digging until you find out what your problem is. Good luck.

Marlene

[kbtoyssni]

I also wanted to ask about the Ore-Ida Fries--that might be worth a specific post to alert others! Do ALL their fries contain unlisted gluten???

The Crisper fries are not on Ore Ida's gluten-free list: Open Original Shared Link

I have no idea what the packaging says. I do eat Ore Ida's other gluten-free fries with no problems.

[Lins]

Well, there's lots of good advice here and I'm only popping in for moral support. In May, oh heck even in June and July, I was in the same boat as you, frustrated and feeling hopeless. I can distinctly remember thinking I might as well just eat whatever since I already feel like crap. But please just keep doing the best you can. Be diligent, and read those labels. When in doubt, call the company and ask. And don't be afraid to speak up for yourself! It took me a number of months to feel better, so hang in there. It'll be worth it. I can honestly say I feel lots better and have even lost my faux pregnancy belly, lol.

Oh, and I love the Ore Ida fries. I've never eaten the Crispers. I think I avoided them because they appeared to have a weird breading on them, but I don't honestly know what the label said. Anyway, as a former lover of McDonald's fries, I recommend their extra crispy fast food fries.

Take care!

[Offthegrid]

If eliminating dairy doesn't do the trick, try eliminating soy, too. (BTW, rice milk is delicious and IMHO much better tasting than soy milk.)