Just Need Some Support

[catie]

Hi. My name is Catie and I have celiacs. Now that that is out of the way, I am a new new newbie. Been diagnosed for a whopping 3 weeks. Original symptoms began 14 years ago. I really don't know what to expect in recovery. I am 39 years old.

I have been under the impression that my abdominal pain would cease with the implementation of a completely gluten free diet. Thus far, I have read 2 books on celiacs and perused the internet and several cookbooks. I have been uber careful with handwashing and such. Which leads me to what is bothering me. My tummy still hurts. Bad. Why? I don't understand. Is the pain from past gluten?

I really just need to know that it will get better. It doesn't even have to be 100%. I have been in so much pain for years that my standards are really low. I am hoping to be a dynamo before long!!!

Any thoughts would be encouraging as to the source of the pain, the whys', how to cope, and ultimately WILL IT GO AWAY

[Austin Guy]

You may develop other food intolerances or may already have them. Lactose, soy and eggs are the first to look out for. Keep reading here because there are a lot of people who sound more informed than most of the medical community.

[JoshB]

I've been gluten free for about 9 months now. The first couple months were worse. At this point my stomach issues are 60~70% better. Everything else is the same or worse.

I probably had it for twenty years before diagnosis, which isn't uncommon. Unfortunately long term damage is supposed to take longer to heal, and might possibly not heal. Still, I'm grateful that I don't have to run to the bathroom ten times a day, and my stomach rarely hurts now. Also, I know how important it is to eat properly now to prevent further damage, so that keeps me on the straight and narrow even if I worry that the other issues will never go away.

If you're going through what I did, you feel worse right now. You're exhausted and everything is bruised, and maybe you're a bit depressed. That part does get better. Push through and in another week or two you'll pick up and your muscles won't hurt all the time.

There's a ton of info on the forum here about what you can do and eat to speed along healing time.

[ravenwoodglass]

Hi and welcome. Have you deglutened your kitchen? You need to replace your toaster with one dedicated to gluten free only, replace scratched pans and strainers and wooden utensils. Are you eating mostly home cooked naturally gluten free whole foods? That helps also. Make sure you check any med or supplement you take to make sure they are gluten free. Read the whole label on supplements as they can have wheat and barley grass and still say gluten free. Neither is something you want. It can take some time to heal so hang in there and hopefully you will feel better soon.

[AVR1962]

If your stomach is burning it may be GERD.....I didn't think I had any problems with the typical acid reflux but doc put me on Nexium and I actually had to stay on it for over 5 months while my system healed. Could be too that you may have another intolerance such as dairy. Experiment with that and you may find your answer. I have problems dairy, gluten and high fructose. The other thing I would watch very carefully besides all your package ingredients, is make sure your body is getting the proper nutrients. My body was so depleted of vitamins and minerals that I was having all kinds of weird symptoms. If you find this is a problem, there's lots of info on the Internet about symptoms linked to vitamin defiencies.

[cyberprof]

Hi. My name is Catie and I have celiacs. Now that that is out of the way, I am a new new newbie. Been diagnosed for a whopping 3 weeks. Original symptoms began 14 years ago. I really don't know what to expect in recovery. I am 39 years old.

I have been under the impression that my abdominal pain would cease with the implementation of a completely gluten free diet. Thus far, I have read 2 books on celiacs and perused the internet and several cookbooks. I have been uber careful with handwashing and such. Which leads me to what is bothering me. My tummy still hurts. Bad. Why? I don't understand. Is the pain from past gluten?

I really just need to know that it will get better. It doesn't even have to be 100%. I have been in so much pain for years that my standards are really low. I am hoping to be a dynamo before long!!!

Any thoughts would be encouraging as to the source of the pain, the whys', how to cope, and ultimately WILL IT GO AWAY

Catie, welcome.

Not to discount the other posters, but three weeks is really early. Don't worry about other things, just keep it simple. Eat whole, natural foods (hamburger, steak, chicken, fish, fresh (cooked) veggies, rice, baked potatoes). Try not to eat replacement foods (gluten free bread, treats etc) just yet -wait until you heal. Cook veggies and fruits as raw may be irritating. Drink lots of water. Don't eat too much fat or processed, frozen meals even if they're gluten-free.

It will get better. The pain may take 2-3 months to go away but it most likely will. Energy will come back. Hang in there!

[allergyprone]

hi i'm 18 i was diagnosed a little over 2 years ago, going gluten free takes time when i was first diagnosed i started by taking out all the obvious things like bread but i didn't understand cross contamination and didn't deal with it for a couple months after i had completely eliminated every trace of gluten i could find i still wasn't feeling better so my doctor gave me a medication that reset my body after that i felt great so even if you don't start feeling better imediately over time it gets better and easier

hope that helps a little

[catie]

Thanks to you all for your replies. It took me a while to find my original post! ahahah.

I don't know what to think. I just want to get thru the next few days, even thru the next meal. It feels like I have entered a new world where what I thought was right is now wrong. Overall, I think I am doing alright.

I am only eating whole foods right now. Fruits, veggies, and meats. Nothing packaged except rice, you know what I mean. I figure that I need to say good bye to the 'old' lifestyle so that I will NEVER go back.

Here's another question. Vitamins. All those natural healing texts tell you to do lots of mega doses of vitamins. I started down that road, mostly researched each tablet, and I am thinking they might be hurting me. Just pain not the big D. Opinions?

Tonight, my friends at church made gluten free cupcakes. I didn't have the heart to give her the 3rd degree since she had gone out of her way to love, honor, and serve me. They were the most delicious thing I had eaten in a 3 weeks. We'll see how much cross-contamination there was tomorrow and maybe then I'll have the nerve to question her more thoroughly.

Blessings to you all, catie

[AVR1962]

Here's another question. Vitamins. All those natural healing texts tell you to do lots of mega doses of vitamins. I started down that road, mostly researched each tablet, and I am thinking they might be hurting me. Just pain not the big D. Opinions?

Vitamins saved me, in all seriousness. My body was not absorbing nutrients, to the point of bone loss, as I had no idea I had an intolerance and alot of damage had taken place in the process. In my case my body was showing signs of the malabsortion and with every symptoms I found it linked to a vitamin or mineral defiency. When I started taking the extra supplements, and stayed off the glutens, my problems have gone away one by one. The only thing that I have ran into is that because I was eating more avocados and bananas to get more potassium into my body I started having swelling in my feet and these foods can cause that I understand, and that is the sort of thing that can happen when you make changes in your diet by supplementing with more.....you have to find that balance that works and find the nutrients the body needs which is amatter of experimenting with.

[Bubba's Mom]

I just wanted to add..be sure you eat something before taking the vitamins and suppliments. B vitamins can really upset your tummy if taken on an empty stomach.

Best wishes to you.

[catie]

I am having a bad day, bad week, and a bad month. I am so tired of this abdominal pain. Pain is crazy. It works on you for a while, then you worry your tummy is going to hurt, it hurts and then the anxiety makes it hurt worse.

I am trying so hard to be patient. I just keep hoping that the pain will end. I have not eaten even 1 lick of gluten. Cleaned out the kitchen. Everything. Then, I found the latest source. Splenda.

I keep trying to find the good in this. This is what I have got so far: I will never have to eat lowfat or fat free anything again. Now, this will include anything made with fake sweetener again. I've lost 8-10lbs. Wow. Maybe, someday, my tummy will quit hurting. That is the one I am waiting for.

[cyberprof]

I am having a bad day, bad week, and a bad month. I am so tired of this abdominal pain. Pain is crazy. It works on you for a while, then you worry your tummy is going to hurt, it hurts and then the anxiety makes it hurt worse.

I am trying so hard to be patient. I just keep hoping that the pain will end. I have not eaten even 1 lick of gluten. Cleaned out the kitchen. Everything. Then, I found the latest source. Splenda.

I keep trying to find the good in this. This is what I have got so far: I will never have to eat lowfat or fat free anything again. Now, this will include anything made with fake sweetener again. I've lost 8-10lbs. Wow. Maybe, someday, my tummy will quit hurting. That is the one I am waiting for.

I'm sorry you're still having problems. You don't work in a bakery/restaurant do you? You're not remodeling your house/condo? (Drywall can contain wheat.)

If you've eliminated sources like vitamins, meds, family members/cross-contamination, and processed food, I'd go on a modified elimination diet.

My suggestion: eat just plain rice, plain chicken or turkey, canned pears, sweet potatoes: Only non-iodized salt for seasoning. Eat that for three meals a day for two weeks. See if that helps. I know it's restrictive but if it helps with the pain it will be worth it. If it does, then add in other items one at a time every few days, like salmon, grapes, carrots, avocados. See these instructions (for nursing moms, but the principles are the same). Open Original Shared Link Possible problems could be soy, dairy, nightshades (tomatoes, eggplant, peppers), nuts, eggs - add these last.

Oh, and keep a log of what you eat.

Good luck, I hope this works for you.

[pricklypear1971]

I'm sorry. Years ago I had acid reflux and NOTHING helped except meditation and visualization. I literally "imagined" the pain moving out of my body through my arms and out my fingers. The brain is a powerful thing.

But definitely try to eat mild, simple foods, drink lots of water, and keep a food log. It should get better.

Sublingual vitamins might be better right now. Solid vitamins used to set me off.

And cross contamination is a real pain - after reading this now I have to get new wooden spoons.

Btw - ALTOIDS have gluten in them, as well as my hair coloring. SOB!!!

[T.H.]

So sorry that it's been so upsetting and difficult for you! It sounds so much like what happened to me. I got sicker going on the gluten-free diet, and was losing weight like mad: 1- 1 1/2 pounds a day for the first few weeks. Starving all the time, miserable. Really, really sympathize, hon!

So, lemme see what I can add that might help, if anything!

First, what happened to me, in a nutshell, in case it helps.

I turned out to have food allergies/intolerances. I kept a food journal, recorded reactions, and tried to find connections. Then was also tested for allergies. These were big gastro problems for me - no hives, just gastro issues. Then there was gluten cc in places I wasn't expecting. Between the two issues, I ate something bad at every meal and was sick every day, ugh.

So, things to look for that are a little odd, but might be worth a gander:

1. Toiletries: lipstick, toothpaste, shampoo that is washing over your lips - needs to be gluten free.

2. You said that you use nothing packaged except rice. Just checking to make sure there's not something you're forgetting. Do you use any salt? Any oil? Any spices? These can be contaminated, whether because of processing (An oil of mine was processed on a line that also processed wheat germ oil) or because you used these with your previous gluten cooking and they now have gluten covering the top, or inside the container. If nothing else, you can drop some of these for a while and see if it helps - although cooking without salt is just no fun.

3. What kind of meat do you get? This can get contaminated at the butcher's. There are wheat coatings put on in the morning while other meat is being cut up, and ground meat is often made on grinders that also make sausage with gluten added. Buying meat from another source, like frozen from the slaughterhouse, can cut down on that. Or whole cuts, asking them to get a new one that hasn't been broken out of the package for you. Sometimes you can get larger amounts of meat, that you have to cut up yourself, that are still sealed, if you ask at the butcher's.

4. What brand rice do you use? I am an oat sensitive celiac - about 10-15% of us are - and we have to avoid oat contamination, even gluten-free oats. One of the rice brands we were buying at first (Lundberg) grows oats as its cover crop. A number of other oat sensitive celiacs I know seem to feel ill after eating their rice.

5.For fruits and veggies: do you wash them with soap and water? With the trend to offer 'free cookies' to little children so their moms can grocery shop in peace, sometimes these little gluteny hands are touching the fruits and veggies and dropping them back on the stacks, so we end up with contaminated fruits and veggies.

6. vitamins - I was in the same bag as you - vitamins make me feel awful, although I seem to have issues with the dyes as well as other things. I would definitely call them up to see if they are gluten-free, and if they TEST for gluten. Many will say that they are gluten-free, but they don't actually test to confirm that. I've even asked if they test, and they say 'I'm sure we do,' and it turns out they were wrong. Just an area to be really careful about.

7. Other allergies, intolerances that seem common in celiacs I've known: grains/corn, soy, dairy, nightshades (potato, tomato, eggplant, but not sweet potato). For many of us, when we're living without the old foods, we go straight to potatoes, which would obviously make you feel terrible if you end up having trouble with nightshades, yeah?

8. If nothing is helping, and you're not feeling better, you're welcome to head down the list to the super sensitive forum. Don't know if that is your issue, but there are those of us who react to so little gluten that we have to go to some extreme lengths to avoid it, even on a fruit/veggie/meat diet. If nothing else seems to be working, we're always happy to pass on what works for us. :-)

[lucia]

I had similar issues when I went gluten-free. It's worth noting that we are about the same age, so we can both assume that our poor guts sustained years of damage before we stopped asking them to deal with a substance that they basically find poisonous. By the time I discovered I was reacting to gluten, an endoscopy showed that my stomach was oozing blood. It's no surprise then that my symptoms eventually got worse when I went off gluten, even as my body was spared the stress of having to deal with this poison. My gut was a mess.

I first made sure I wasn't accidentally ingesting gluten. Then, in addition, I cut out dairy, then corn, then soy. But even this wasn't enough. It got to the point where I would just have a little water and feel terrible digestive cramps. Eventually (on advice from someone here), I turned to the Special Carbohydrate Diet (Open Original Shared Link). I followed the stages scrupulously. I didn't have anything except eggs, chicken, fish, vegetables (but no nightshades), and fruits for 6 months - no grains at all, no alcohol, and no caffeine. I didn't even take pain relievers in order to avoid grains. This diet was extreme, but it worked!

I think the medical industry underestimates how badly gluten can damage those of us who suffer from it. It takes a lot of people on this board a fair amount of time to get better. They have to work hard at it and look at many possibilities for healing even after cutting out gluten. But this is a great place to find support and knowledge and to get better.

[catie]

I just bought the SCD off of Amazon. At this point, I'll do anything. Including ALL of the good advice listed above. Thank you all for your help and specifically, the kindness. c