Need Help - Four Months Post-Diagnosis

[myadidas1981]

So here's my story, as brief as I can tell it:

I've had a long history of stomach problems; we're talking 10+ years, and I'm 31 now. Over the years, my problems had been dismissed as everything from IBS to anxiety, and no doctors could ever give me a firm explanation (or treatment) for what was ailing me.

Fast forward to March of this year when my gastro decided to test me for Celiac Disease, for which I came back positive. I immediately changed my diet, and just as immediately noticed marked improvement in bowel movements, stomach pain, gasiness and overall temperment. It was like getting my high school health back.

That relief was fleeting, though. After about a solid 4-5 weeks of great health, I had a pretty severe relapse, and it felt like my symptoms were worse than ever. That relapse lasted two solid weeks, and since then I haven't been able to get back to that "Jesus, I feel like a normal human being" place ever since. I've had some good days in the last 2 1/2 months, but the bad unfortunately have far outweighed the good.

On average now, I do feel better than I did at the beginning of the year (when I was certain I had stomach cancer or something life-threatening), but I want to get back to feeling like I did when I first went gluten-free.

My question is, is this pattern of healing normal?

Has anyone else had this same experience over the course of their healing process?

And how long should it take for me to be in a good place?

I haven't knowingly ingested gluten since my diagnosis, I take Culturelle daily, I eat pretty cleanly and I read lots about my disease. But I still end up dealing with constant nausea, watery stools and bloating.

Help, please? And thank you kindly in advance.

[rosetapper23]

Hopefully, a number of people will jump in with suggestions, but, in the interim, I'll take a stab at this. For a lot of us, healing takes a long time. My digestive complaints took a full 18 months of strict compliance with the gluten-free diet. That said, many people react poorly to a number of foods while they're healing, as though their immune system has gone wild and is rejecting foods that shouldn't bother them. It is oftentimes necessary to eliminate dairy and soy when first going gluten free to see if the digestive complaints resolve. Then you can reintroduce these foods later to see if you can tolerate them once your digestive system has had time to heal. For many of us, soy is never an option--we get really sick when we eat it. Some people are able to reintroduce dairy with no problem after a few months, and others remain dairy intolerant. Also, many celiacs cannot tolerate even certified-gluten-free oats.

If you end up eliminating dairy and soy from your diet and you still feel unwell, you might have to keep a daily log to begin eliminating other suspicious foods that may be causing you digestive distress.

Lastly, it's possible that you may be experiencing malabsorption of certain nutrients, which has resulted in causing your symptoms. Here is a list of nutrients and the symptoms of deficiency associated with each one:

Open Original Shared Link

Perhaps others have some good advice for you, as well. Good luck to you!

[tom]

Hehe I didn't notice we were replying at the same time!

********

Have you considered trying dairy-free and/or soy-free?

If you do, give it at least 2 wks. I'd done soy-free trials of just 3-5 days 3x before a 2wk trial had near-miraculous results.

[lorah322]

I agree with rosetapper and tom. My understanding is that when you remove a food that your body rejects, other sensitivities are likely to surface as well. I tried reintroducing dairy 2 weeks ago... bad idea, because I felt awful after a few days. I hope you start to feel better soon!

[myadidas1981]

Thank you for such quick, helpful responses.

I've been lactose intolerant since birth, so I do not drink milk or eat too much dairy. Sometimes I do indulge and eat ice cream and froyo, but I almost always pay the price. I will try cutting out dairy completely along with soy for a couple of weeks and see if that helps.

Thanks, rosetapper, for attaching that PDF. One of earliest red flags or warning signs for Celiac (in retrospect) was borderline B-12 deficiency that was causing heart skips back in late 2010. I take a sublingual B-12 tablet and a folic acid tablet every morning, and that has helped tremendously.

This is an odd question, but does anyone ever have elevated bilirubin levels on blood tests? For several years now, every time I get bloodwork my bilirubin is outside the normal range but never high enough to concern my doctor. Could there be some Celiac relationship I'm unaware of at work there?

[GFinDC]

Thank you for such quick, helpful responses.

I've been lactose intolerant since birth, so I do not drink milk or eat too much dairy. Sometimes I do indulge and eat ice cream and froyo, but I almost always pay the price. I will try cutting out dairy completely along with soy for a couple of weeks and see if that helps.

Thanks, rosetapper, for attaching that PDF. One of earliest red flags or warning signs for Celiac (in retrospect) was borderline B-12 deficiency that was causing heart skips back in late 2010. I take a sublingual B-12 tablet and a folic acid tablet every morning, and that has helped tremendously.

This is an odd question, but does anyone ever have elevated bilirubin levels on blood tests? For several years now, every time I get bloodwork my bilirubin is outside the normal range but never high enough to concern my doctor. Could there be some Celiac relationship I'm unaware of at work there?

When I Went soy-free it took about a month and a half to get over it. So don't assume it isn't working if you don't feel better right away.

There is a relation between celiac and liver issues. Probably a good reason to limit or eliminate alcohol also.

[slee11211]

Question for you: are you eating many "gluten free" replacement foods? (ie: gluten free bread, gluten-free muffins or cookies, gluten-free pizzas, etc) I'll answer when I see reply, as it may not pertain to your situation!

[myadidas1981]

Question for you: are you eating many "gluten free" replacement foods? (ie: gluten free bread, gluten-free muffins or cookies, gluten-free pizzas, etc) I'll answer when I see reply, as it may not pertain to your situation!

Ha, nope.

1) I don't like the taste of a lot of "replacement" products, and 2) a lot of that stuff is just too rich for my blood anyway. Can't justify the premium on a lot of the ready-to-buy gluten-free products out there. But Udi's does make a damn-fine hamburger bun.

I've mostly replaced the gluten with more fruits, eggs, meats and other non-processed items. Lost about 15 pounds real fast, but have since kind of stabilized/plateaued.

[slee11211]

Ha, nope.

1) I don't like the taste of a lot of "replacement" products, and 2) a lot of that stuff is just too rich for my blood anyway. Can't justify the premium on a lot of the ready-to-buy gluten-free products out there. But Udi's does make a damn-fine hamburger bun.

I've mostly replaced the gluten with more fruits, eggs, meats and other non-processed items. Lost about 15 pounds real fast, but have since kind of stabilized/plateaued.

Not sure if you have a cooperative MD, but it could be helpful to do an in depth panel for allergies. Pretty common to find that a lot of foods you wouldn't expect are now allergies. I was lactose intolerant since college (46 now) and turned out it wasn't intolerant, was full on allergic. If you're really good with foods, you might be able to just do elimination and figure it out (I don't know how people do it, but it might be less $).

Good luck to you!

[dws]

So here's my story, as brief as I can tell it:

I've had a long history of stomach problems; we're talking 10+ years, and I'm 31 now. Over the years, my problems had been dismissed as everything from IBS to anxiety, and no doctors could ever give me a firm explanation (or treatment) for what was ailing me.

Fast forward to March of this year when my gastro decided to test me for Celiac Disease, for which I came back positive. I immediately changed my diet, and just as immediately noticed marked improvement in bowel movements, stomach pain, gasiness and overall temperment. It was like getting my high school health back.

That relief was fleeting, though. After about a solid 4-5 weeks of great health, I had a pretty severe relapse, and it felt like my symptoms were worse than ever. That relapse lasted two solid weeks, and since then I haven't been able to get back to that "Jesus, I feel like a normal human being" place ever since. I've had some good days in the last 2 1/2 months, but the bad unfortunately have far outweighed the good.

On average now, I do feel better than I did at the beginning of the year (when I was certain I had stomach cancer or something life-threatening), but I want to get back to feeling like I did when I first went gluten-free.

My question is, is this pattern of healing normal?

Has anyone else had this same experience over the course of their healing process?

And how long should it take for me to be in a good place?

I haven't knowingly ingested gluten since my diagnosis, I take Culturelle daily, I eat pretty cleanly and I read lots about my disease. But I still end up dealing with constant nausea, watery stools and bloating.

Help, please? And thank you kindly in advance.

I had a very similar thing happen to me except with me, it was stretched out over a longer period of time. My miraculous recovery lasted about a year and a half. What helped me a lot was what I learned from this forum about dealing with cross contamination and going on a whole foods diet to combat an increased sensitivity to gluten. The gluten free stuff I was devouring in mass had trace amounts that were causing me problems. I still don't feel as well as I did during that 1st year, but I do feel better. Sounds like you are avoiding the processed stuff already, so I'm not sure what's going on. Maybe some contamination in the kitchen?

[myadidas1981]

Not sure if you have a cooperative MD, but it could be helpful to do an in depth panel for allergies. Pretty common to find that a lot of foods you wouldn't expect are now allergies. I was lactose intolerant since college (46 now) and turned out it wasn't intolerant, was full on allergic. If you're really good with foods, you might be able to just do elimination and figure it out (I don't know how people do it, but it might be less $).

Good luck to you!

How did you ultimately find out you were allergic to lactose? Is there a test for that. When I was a baby, my mom had to go so far as to buy special formula for me - that's how long and how bad my lactose intolerance has been.

[myadidas1981]

I had a very similar thing happen to me except with me, it was stretched out over a longer period of time. My miraculous recovery lasted about a year and a half. What helped me a lot was what I learned from this forum about dealing with cross contamination and going on a whole foods diet to combat an increased sensitivity to gluten. The gluten free stuff I was devouring in mass had trace amounts that were causing me problems. I still don't feel as well as I did during that 1st year, but I do feel better. Sounds like you are avoiding the processed stuff already, so I'm not sure what's going on. Maybe some contamination in the kitchen?

Cross-contamination is very possible. And I know I need to be more diligent about label reading.

My wife and kids aren't gluten-free, so there are plenty of gluten-containing ingredients getting tossed around our kitchen. For instance, I know my wife recently made a cake for a co-worker using our mixing bowls. I know because I ate some popcorn out of one of those mixing bowls and got pretty sick shortly thereafter. I even scrubbed the bowls myself after seeing some batter residue - hard to believe even then I could still get sick, so maybe it might have been something else (?)

[dws]

Cross-contamination is very possible. And I know I need to be more diligent about label reading.

My wife and kids aren't gluten-free, so there are plenty of gluten-containing ingredients getting tossed around our kitchen. For instance, I know my wife recently made a cake for a co-worker using our mixing bowls. I know because I ate some popcorn out of one of those mixing bowls and got pretty sick shortly thereafter. I even scrubbed the bowls myself after seeing some batter residue - hard to believe even then I could still get sick, so maybe it might have been something else (?)

Well, the mixed kitchen can be a tough road to travel. Since we're talking parts per million, it's hard to feel comfortable preparing food in a kitchen also used by gluten eaters. Flour floats around like crazy and gets everywhere. My family resisted for a long time but we finally made our kitchen gluten free. If nothing else, it has helped my sanity. I'll give you this advice about food. If you think you are eating gluten free and still having problems, you may have a higher sensitivity level. You can drive yourself crazy trying to figure out which processed foods including gluten free ones are bothering you or you can go totally unprocessed for a month or so and see if you feel better. It's a lot of work and a lot of shopping and cooking, but at least you can figure out whether or not trace gluten contamination is the problem. You would have to make your kitchen gluten free at the same time or it would be a wasted effort. Don't eat out, don't eat things friends have prepared for you because they are trying to be nice. Just go to these extremes for a month (some would say longer) and then decide how you want to continue based on how you feel. Other food sensitivities may be a problem, but since gluten is a known for you, you may want to make sure gluten isn't it alone before you start needlessly eliminating other things.

[GFinDC]

Popcorn is hard for me to digest. For that matter any kind of seed or shell is hard for me to digest. Except peanuts for some reason. You are right though, you will need to wash the pots and pans and silverware very well It would probably be simpler to keep a separate set of pots and pans for your cooking. Dish washers may not do a good enough job of getting gluten rinsed off either. A hand wash and rinse is a good idea.

Be sure and check any teas, vitamins, meds you are taking for gluten also. Sometimes people don't think to look at those things for gluten. Pet food can be a problem also if they lick you or their own fur and then you pet them. If gluten gets on your hands it can find it's way to your face and maybe your mouth especially if you eat a finger food and don't wash first.

[myadidas1981]

Bumping my own thread because I'm at my wits end, and my body is feeling pretty worn out.

I ended up going in to see my doctor a couple of weeks ago and told her about the nausea and discomfort I'd been experiencing in my abdomen, along with the constant pain under the right side of my ribcage. Her thoughts were possible ulcer(s), so she decided to try me on a month's worth of prescription Omeprazole (20 Mg) and Sucralfate.

In addition, I had already been drinking homemade cabbage juice, and I also started drinking coconut oil to try and help soothe the pain. This week, I was starting to maybe (ever so slightly) feel like I was turning a corner, and then I had some monster cookies my wife made with gluten-free oats - and "BAM," bed-ridden for 24 hours.

Now I don't feel any better at all. Honestly, I feel like I'm slowly decaying from the inside out. I want to ask my doctor to run some more tests, but I don't know what to ask her to test for (re-check gliadin? - h. pylori test? - another freaking endoscopy?). I've got two little kids and a wife that depend on me, and I feel like I'm letting them down. And the frustrating thing is, I feel helpless.

Anybody have any guesses as to what I should have checked out? Here are some of my worst symptoms:

-Constant nausea and fullness

-Irregular bowel movements

-Pain beneath rib cage (left side)

-Dull ache in lower back (both sides)

-Feeling the need to regurgitate, but being unable to vomit

-Occasional dull nagging pain in lower left pelvis (just below my waistline)

Please, please, please - someone throw me a bone.