New To Celiac Disease, Not Improving

[element192]

Hi Everyone,

As with many other posters, I'm new to this. I was just diagnosed with Celiac Disease almost three months ago. My symptoms before getting tested were that I would get extreme stomach pain that would last a couple of days about every 10 days or so. After seeing the doctor I was scheduled for an endoscopy and blood work to check for Celiac. Both came back positive...

Since then I have taken on a completely gluten free diet with only a few bumps in the road when I ate (or drank) something that had "hidden" gluten in it. I really haven't had any big "I feel so much better moment" since starting the diet; although, I no longer get those stomach pains. But as of about 3 or 4 weeks ago I've just had a nagging discomfort in my stomach. It's not really painful and it doesn't really stop me from living my life, it's just preventing me from really enjoying life. I'm never really in the mood to do much, it's hard to concentrate on things, and don't have much desire to exercise which I used to love doing. But when I do force myself into the gym I am able to have a decent workout.

In response to this discomfort, this last weekend I stopped eating spicy foods, I stopped all dairy, and have even given up coffee (which I'm still having a hard time coping with). It's been about 4 days of this and I feel the exact same. I'm basically eating Rice Chex with almond milk in the morning, some various fruit during the day, bland chicken and brown rice for my meals. I also eat air popped popcorn with olive oil, salt, and garlic powder from time to time. Popcorn is okay, right?

Could this all be part of my "healing process" I hear so much about? How come I never had this problem even when I was eating gluten regularly? And why would it have just started? I've read online that probiotics can help and so I am going to be taking Pearl probiotics starting tomorrow, that's when I get them. I'm hoping that helps. I've been taking a multivitamin, B vitamins, magnesium, and vitamin D daily.

I saw my doctor and he scheduled me for some additional blood work so I'm waiting on that but maybe someone on the forums can let me know if they think this is some kind of Celiac issue?

Thanks in advance.

Chris

[eatmeat4good]

Hi and Welcome!

Yes, this could be the "healing process". You didn't have this when you were eating gluten because all or some of your villi had been "mowed off" so to speak. Now they are growing back.

Yes, my stomach was really uncomfortable for a long time when I first went gluten free. It was very disconcerting how much rumbling and hurting was going on during the healing and I thought it was cross contamination but it lingered even when I was really strict.

I think you are doing all the right things by eliminating other possible food issues and also getting your blood tested and taking vitamins.

I had to get a prescription for the pain/nausea in the stomach, but I didn't have to take it very long...like a few weeks. I took Promethazine. It worked great.

I looked at it like the stomach and intestines are waking up and the "baby villi" are growing back and it can be uncomfortable.

I didn't get around to eliminating dairy and eggs until a few weeks ago, but that has helped a lot. (shh I kept the coffee ) And yes popcorn should be ok, it certainly is gluten free, but may be hard to digest so you could consider that possibility. And some people say they react to corn.

I know it sounds trite to say it is "part of the healing process" but I really think it is. That is...if your Dr. rules out other things like intestinal bacterial infections and such that I have heard of people having.

You are not alone and I hope you feel better soon.

[rosetapper23]

I have two comments to make, and I don't know if they'll help you, but I'm hoping they will.

First, when people give up gluten, they often eliminate a lot of simple carbs...and this results in low blood sugar. It's probably not what's making your stomach feel bad, but it could be making you feel tired and sapped of energy.

Second, you might check to see if your salt contains iodine. Many people with celiac react to iodine. If it turns out you've been ingesting iodized salt, chuck it and buy the non-iodized type. Perhaps you'll start feeling better.

[Lucydesi]

I can certainly relate. Like you I still have uncomfortable sensations in my stomach and almost a pressure feeling sometimes in my bowels. I really like the probiotic Align for pain in my intestines if I inadvertently get gluten. Some days I feel pretty good and others I feel tired and depressed. In many ways I feel "lucky" to have this autoimmune disorder but some days I get tired of trying to figure out why I feel like crap. Hang in. We will figure this out together.

[element192]

Thank you both for your replies. I'm certainly hoping that it's just the regrowing process. The main reason I'm not overly concerned is that it really isn't all that painful, just uncomfortable.

eatmeat4good, why did you recently get rid of eggs and dairy in your diet? I'm only doing this as a precaution, I'm really hoping it's only temporary. I've never had an actual reaction to dairy (or spicy food, or caffeine for that matter) I was just hoping that could have been causing my discomfort during my healing. Now that it's been a few days without any of those things I'm starting to think they had no effect. Since I wasn't all that much of a dairy person to begin with I may just stay away from that for a few more weeks, maybe months, just to be safe. Not having coffee may be doing more harm than good... I'm dying without it!

rosetapper23, I've been eating a ton of rice and potatoes. I haven't made any attempt to remove carbs from my diet. Coincidentally enough, I have never been a big pasta or bread person. So luckily for me having to remove those from my diet wasn't as earth shattering as I'm sure it is for most. As for my salt, I'm just using sea salt which I don't believe has any iodine. I'll double check it though.

Thanks again for your advice.

[eatmeat4good]

Why did I give up dairy and eggs? I don't know...I ask myself every day!I have the skin form of Celiac called Dermatitis Herpetiformis and it has been very slow healing. I'm at 6 months now and very nearly healed.

I didn't think I was intolerant of dairy only because I like cream in my coffee. And I love cheese. I don't seem to get stomach problems from dairy or eggs but maybe mental fog. It wasn't until I was not healing from DH that I cut out dairy and eggs due to the possibility of iodine causing my sores to react. It has not only worked on the DH sores, but I think I feel better mentally too. So I was reading about the effects of casein on the brain and well, I don't know I just really do feel better without dairy and eggs. I was too stubborn to try to eliminate them but it helped when I finally did. This is one giant huge experiment puzzle for me.

I hope to add things back eventually but it seems the more I get rid of the better I feel. But I'm hanging on to my coffee for dear life. (weak and without cream I might add)

[mushroom]

I have been sensitized to caffeine for many years - only drink decaf, no coke or caffeine containing beverages. I was lactose intolerant for a long time, not controlled by Lactaid, but can finally tolerate it again. Stool testing said I was intolerant of eggs, but eating them has never bothered me so I ignored that. Some say it is the acid in the coffee, not the caffeine, which does them in. There is a very definite withdrawal from coffee which may take several weeks, often accompanied by headaches. I was lucky I did not go through this.

eatmeat4good makes a good point about the healing process going on in the gut. It is good during this period to treat your gut kindly and with respect. It has been abused by the gluten and will respond to tender loving care. So make things as easy for it as you can. I personally do not tolerate corn, but if I did I would not as a newly diagnosed celiac inflict popcorn on my tender healing gut. It is very hard to digest. Similarly, I would avoid foods with tough skins (remove them) like tomatoes and apples, and broccoli stalks and probably most of the cruciferous veggies. While raw foods are good for you, they are very hard on a celiac damaged gut, so be thoughtful about what you ask it to digest, knowing it is damaged and healing.

Probiotics are good, and sometimes it helps to add digestive enzymes because your pancreas often has been under stress and has a hard time producing enough for your needs, so help it along

Otherwise, you just have to be patient because these changes do not happen overnight because you did not get into this state overnight. You can't just turn off the switch and have there be darkness - light is going to shine through for quite a while until the healing takes place.

[eatmeat4good]

Mushroom,

May I ask why you gave up caffeine? With such a limited diet anyway, I wanna have a coke and a coffee whenever I want to. Did you get jittery or you just think it is better for you? With everything else I've been giving up that one will take me kicking and screaming down the block. But if there is a reason to give up caffeine, I would consider it. Ha! I guess the fact that I am awake at night writing posts at the same time as the girl from Australia might just give me a clue why I need to give up caffeine.

But really- is coffee hard on the stomach? Bad for your brain? Thoughts?

[NateJ]

Mushroom,

May I ask why you gave up caffeine? With such a limited diet anyway, I wanna have a coke and a coffee whenever I want to. Did you get jittery or you just think it is better for you? With everything else I've been giving up that one will take me kicking and screaming down the block. But if there is a reason to give up caffeine, I would consider it. Ha! I guess the fact that I am awake at night writing posts at the same time as the girl from Australia might just give me a clue why I need to give up caffeine.

But really- is coffee hard on the stomach? Bad for your brain? Thoughts?

It probably depends on the person. I know coffee tears me up now. I used to be able to drink 2-3 cups a day, but not anymore. Since i had my gall bladder removed I can barely touch a half cup of decaff without running directly to the bathroom. Just depends on the person.

A lot of people here have told me that if your symptoms don't improve then try eliminating things for periods of time to see if it helps. I started with gluten, then caffeine (soda and coffee), now dairy is next which to me is the hardest cause I love butter and cheese, not sure what would come after that though. I have to be carefull cause I'm down to 110 lbs and I'm 5'9".

[element192]

Thanks, everyone for the replies. I never really considered that hard to digest foods may be impeding my healing. I'll have to start cutting out the popcorn and broccoli as those are two foods I eat on a regular basis... I'm going to try and keep just a little bit of coffee and see how it goes, I'm dying without it. I cold brew mine anyway so it is far less acidic than normal coffee would be; hopefully that helps.

Boy, at first I didn't think Celiac would be all that big of a deal because I didn't eat a whole lot of glutenous foods to begin with, I never would have imagined it would have so many other effects! This is brutal.

[Damonic]

You might also find this information helpful:

https://www.celiac.com/articles/22105/1/Major-Breakthrough-Prebiotics-and-Probiotics-Can-Reduce-Inflammation-and-Reduce-Symptoms-of-Celiac-Disease/Page1.html

[element192]

By the way, I just learned about these enzyme supplements yesterday when I was reading through some posts. Does anyone have a recommendation for the best one? I've read that even some marked as "gluten free" have given people trouble. I have a Whole Foods nearby so I'm sure they would have the best selection, I would love to hear what has worked best for people.

On a side note, are these enzymes okay to take when I'm also on probiotics?

[NateJ]

By the way, I just learned about these enzyme supplements yesterday when I was reading through some posts. Does anyone have a recommendation for the best one? I've read that even some marked as "gluten free" have given people trouble. I have a Whole Foods nearby so I'm sure they would have the best selection, I would love to hear what has worked best for people.

On a side note, are these enzymes okay to take when I'm also on probiotics?

I think enzymes and probiotics are both bacteria. That seems like a lot of bacteria to be putting in you. But I guess if its good bacteria it doesn't matter. Maybe try a little bit at first and see what happens?

[IrishHeart]

A compromised gut has a hard time with many foods, unfortunately. Mine are beans and citrus fruits,peppers, soy and eggs. Forget raw veggies--OUCH!! Broccoli and other high fiber veggies can give me trouble, too. Acidic foods are tough on raw GI tracts--like coffee, toms or OJ. I cannot drink anything but water...the rest HURT!I see what gives me grief and take it out for awhile and try again. It's a Bummer. But I hope it is not forever!

Digestive enzyme supplements are NOT bacteria. They are usually plant-derived, from papaya, pineapple, etc.

We all have digestive enzymes in our bodies. Some people are deficient in them as a result of impaired GI tracts, leaky guts, or pancreatitis, etc. Please...read about them and see if you might find them helpful.

Probiotics are beneficial and are not harmful in any way. Many compromised guts have an imbalance of gut flora (for example, my test showed I was totally deficient of good bacteria. Yet, I ate yogurt all of my life, so go figure.)

Yes, you can take them together--many of us do.

Enzymes work well for people who have trouble digesting fats, proteins, carbs, and fiber. Some people just use lactaid--which is a dairy digestive enzyme.

I use digestive enzymes before every meal and they have significantly reduced my gastrointestinal symptoms--which were horrible and made my life hell for many years.

As for dairy---most celiacs need to cut out dairy for the first 6 months or longer.

Lactase, which is the enzyme that breaks down the sugar lactose, is produced in the tip of the villi.

When the villi get blunted in celiac disease, sometimes the ability to digest lactose is decreased and you can become lactose intolerant. This may cause bloating, stomach cramps, diarhea, etc. After you go gluten-free, the villi will heal and most people are able to tolerate dairy foods again. Ice cream....yum. Cannot wait!

My doctor told me from the beginning: NO dairy, even if I do not seem to have an immediate reaction to it. It gives the whole GI tract a better chance to heal.

I still have tummy issues, too, 3 months in--- but the GI tract is really quite a large area to have to heal. It takes time. (I know, I wish it would go faster, too) Hang in there!

Hope this helps!

[mushroom]

I agree with IrishHeart

[IrishHeart]

I agree with IrishHeart

aw, thanks, 'Shroom...I did a lot of homework

[element192]

Thank you very much for the detailed response, IrishHeart.

I had read a recommendation somewhere for the Trader Joe's "Papaya & Pineapple Enzymes" so I went and picked some of those up yesterday and have been taking them with breakfast, lunch, and dinner. I also just started taking my probiotic last night so I'll have to give these some time before I know if they are doing anything. I'm not sure what it may be a result of, but I'm already feeling a little bit better than I have for the past month. My diet hasn't changed too dramatically except for cutting out dairy, maybe that was causing some of the discomfort. I've also added a lot more fruit to my diet, most dried fruits.

I'm sure hoping not all of these changes are permanent, cutting out gluten is hard enough without adding all sorts of other food staples! So my plan is to just keep it simple for the next few months and see how the improvement goes. I did have a little coffee yesterday and it didn't seem to have an effect on me so maybe I'll "treat" myself to that once in a while.

[IrishHeart]

You're welcome!

Maybe the dairy was the culprit!

Give the enzymes and probiotics a chance to work. I hope you continue to feel better!!

[element192]

So just to follow up on this thread, my GI just left me a message that my recent blood work came back. Apparently, despite my best efforts, I'm somehow still getting glutened. I haven't eaten in a restaurant in weeks and I've prepared my food myself the whole time, there's no way I'm directly eating anything with gluten. He said that my levels were definitely down but I still had positive antibody levels, he said that he would have expected them to be much lower.

Does anyone know of any hidden dangers I might be encountering? I don't want to start being paranoid, but do I need to start replacing things in my kitchen? Like baking sheets, cutting boards, wooden spoons??? Our cutting boards are generally used for singular purposes (one for vegetables, one for chicken, one for beef, etc) but maybe at one point something with gluten was used on it, who knows. Does that mean it needs replacing? Our pots and pans are non-stick and have no scratches (we are very careful to never use metal on them) so I don't think those should be a problem.

Anyone have any suggestions??? I'm at a loss.

[mushroom]

I do not know how high your levels tested before and what they are now, but do know that for some people they go down more slowly than for others. That being said, if you are still using kitchen utensils, especially wood or plastic, that have been used for gluten, it is time to replace them. Buy a new dedicated nonstick pan also and use only that pan for a while. Did you get a new toaster and colander? Those are two of the worst culprits. You can put parchment paper on your baking sheets if you don't want to be new ones.

Have you checked all your scrips and OTC meds for gluten? Your personal care products, lotions, toothpaste, lipgloss, chapstick, etc. These are all potential sources of cross-contamination. I am presuming you are lilving in a gluten free household? And not kissing a gluten-eating partner?

[element192]

I do not know how high your levels tested before and what they are now, but do know that for some people they go down more slowly than for others. That being said, if you are still using kitchen utensils, especially wood or plastic, that have been used for gluten, it is time to replace them. Buy a new dedicated nonstick pan also and use only that pan for a while. Did you get a new toaster and colander? Those are two of the worst culprits. You can put parchment paper on your baking sheets if you don't want to be new ones.

Have you checked all your scrips and OTC meds for gluten? Your personal care products, lotions, toothpaste, lipgloss, chapstick, etc. These are all potential sources of cross-contamination. I am presuming you are lilving in a gluten free household? And not kissing a gluten-eating partner?

He didn't really mention how different they were compared to before, but he did mention that antibody levels are an inexact science so it's hard to say if it even means anything.

I've been using the same wooden utensils, and recently I've been covering the baking sheets. I don't use a toaster or a colander for anything so no problem there.

I switched my toothpaste to Tom's of Maine because the Sensodyne I was using could not confirm that it was gluten free. I have Invisalign right now so I brush my teeth 6-8 times a day, yes you read that right.

I'm not on any medications and all of my vitamins are labeled gluten free.

My wife still eats a few gluten containing snacks but they are in sealed containers and stored in a different location than my food. We eat the same meals (gluten free) so there isn't any real CC danger there.

[mushroom]

My wife still eats a few gluten containing snacks but they are in sealed containers and stored in a different location than my food. We eat the same meals (gluten free) so there isn't any real CC danger there.

Well,it would be important for her to brush her teeth before kissing you.