Celiac For 1 Year, Having Trouble Eating Almost Anything For The Last Month

[PatRowdy]

Hey all,

I've been diagnosed celiac for about a year, and until recently, was living fine with the gluten-free diet. About a month ago, I started noticing stomach aches after drinking breakfast shakes, and eating cheese. I found out that dairy intolerance often comes with celiac, which would have been fine as well, except around the same time I started having stomach/abdominal pain after eating almost anything. It started with gluten-free/DF homemade chili, then gluten-free chicken fried rice, and before I knew it I had to cut almost everything out of my diet.

For the last 3-4 weeks I have been eating exclusively raw fruits/vegetables and poached chicken/turkey breast. Literally everything else that I've tried to reintroduce has given me abdominal pain. This includes all types of nuts, white rice, eggs, cod, salmon, peanut butter, even oven-roasted vegetables. I usually start feeling discomfort/tightness in my stomach around 30 seconds to a minute after eating any of these things.

Despite eating 2 avocados and 1-2 chicken breasts a day, I'm not getting enough fat in my diet, and have lost about 15 pounds (down to around 120 lbs. as a 6', 21 year-old male). I recently spoke with my dietician who recommended that I start trying a low FODMAP elimination diet. Thankfully, most of the things I had to eliminate were things I already couldn't eat anyways. However, this limits my diet even further, and I can't even tolerate most of the things that are supposed to be okay to eat on this diet. I have noticed no improvement since starting this diet, which leads me to believe that there is something else going on.

I have been taking multi-vitamins and probiotics daily for about three weeks but am currently losing hope, as none of my doctors/specialists have been able to give me a solid answer. The doctors that I have seen don't accept leaky guy as a legitimate medical condition and have sent me to a few different specialists instead, seeming generally clueless themselves. I am having a consultation for a colonoscopy soon, as well as for a cystoscopy (I apparently also have some sort of kidney/bladder blockage, maybe a stone. We're not sure if it's related to any of this yet). I have seen a naturopath and a dietician, but neither of what they've told me seem to be doing anything to solve the problem.

I feel worse every day, low energy, irritability and a general feeling of tiredness are pretty much constant and it's becoming difficult to deal with school as well as other commitments. Does anyone have any insight as to what could be going on with my body, or at least some general advice on what to do in my situation?

Let me know if you'd like any more information. Thanks for reading, and for any input you may have.

Matt
 

[jddh]

Is the abdominal pain the same symptoms as you had before being diagnosed celiac, ie. are these "glutening" symptoms for you?

 

Do you think you're losing weight because you've had to limit your diet, or because of some other reason?

 

Standard differential approach among general physicians tends to be:

 

1. Check for ulcer (test H. Pylori, prescribe PPIs)

2. Check for organ-related issues (ultrasound)

3. Check blood and stool for abnormal values and parasites

 

General physicians tend to not know too much about gut stuff, so I would consider specialist referral to be a good thing. Have you been sent to a gastroenterologist? 

 

Stomach ulcers tend to be strongly suspected with abdominal pain, so that's a good one to rule out. Someone will probably put you on a course of PPIs to see if they help.

 

Keep eating those safe foods and get the tests done!

[CeciliaAedo]

Hi Matt, Have you consider histamine intolerance? I had similar problems for months and turned out to be histamine intolerance, can you eat fermented food? or drinks? (very rich in histamine), was everything you ate really fresh?  I let you find out  about this subject on the web.  See Dr Amy Myers, researchers Laura Maintz and Natalija Novak, and la Sociedad Española de Deficiencia DAO (I think they have something in English too).  

 

Regards

 

Chinita

[gilligan]

I had the same problem for awhile to the point that I was getting dehydrated daily.  Drinking Pedialyte helped me quite a bit.  The fruit flavored is pretty nasty tasting stuff, but the plain one isn't too bad.  Once the dehydration was under control, I was able to eat a little more - basic foods like chicken, plain hamburger or steak, baked potato, bananas....I couldn't get near raw vegetables or anything with citrus or high fructose content.

[greenbeanie]

Did these new trouble start before or after you began the multivitamin and probiotic? If they started after, could that be the trouble? I know that probiotics really do help a lot of people, but in my own case they actually contributed to significant problems after I'd be gluten free for a while. I am very sensitive to sulftes, even the naturally-occuring sulfites in fermented foods (aged cheese, vinegar, etc.). I think I'd always had this problem, but I wasn't able to sort out what was going on until after I'd been gluten free for a while and other stuff had cleared up.

Anyhow, many gluten-free flours and high in sulfites (used to bleach starches, etc.), and they're used in manufacturing lots of fruit and vegetable products, drink mixes, juices, and even in dried spices and whatnot. My understanding is that (all?) probiotics are fermented, and so they contain sulfites too. I actually redeveloped clinically-documented fat malabsorption about a year after I went gluten free and started taking the high-quality probiotic that my GI recommended. My GI then recommended doubling the probiotic dose, and the problem worsened. I finally figured out what was going on when I had to stop the probiotic for three weeks to do several hydrogen breath tests - the fat malabsorption got much better and the constant mild nausea I'd had also went away. Symptoms returned when I reintroduced the probiotic!

I know this is unusual, and probiotics certainly help many people. But if your problems worsened after starting the probiotic (or vitamin), it might be worth stopping it for a few weeks to see if it makes a difference. In my own case, I think my body was struggling to process the normal sulfites I was eating in vinegar and yogurt, etc., and adding the fermented probiotic was just too much for my body to handle.

Good luck, and I hope you feel better soon!

[JewelEBeth]

I have been gluten free for over a year but seem to be getting more abd pain and heartburn now. My holistic chiropractor found inflammation in my liver and then my gall bladder has been acting up too. I continue to eliminate more foods and am losing weight and energy levels are plummeting. I am now using digestive enzymes with every meal and have seen small improvement. I'm not normally very emotional but had to have a good cry last night over all the foods I've given up. My regular doctor is of no help at all. Not sure what else to do. I know how you feel Matt.

[cyclinglady]

I have been gluten free for over a year but seem to be getting more abd pain and heartburn now. My holistic chiropractor found inflammation in my liver and then my gall bladder has been acting up too. I continue to eliminate more foods and am losing weight and energy levels are plummeting. I am now using digestive enzymes with every meal and have seen small improvement. I'm not normally very emotional but had to have a good cry last night over all the foods I've given up. My regular doctor is of no help at all. Not sure what else to do. I know how you feel Matt.

Jewel,

Welcome to the forum! Have you had a HIDA scan of your gallbladder?

[JewelEBeth]

Jewel,

Welcome to the forum! Have you had a HIDA scan of your gallbladder?

No. I'm thinking I should have some further testing done but I'm worried about being pressured to have it removed if the doctor sees a problem. I also don't won't to go back on meds like nexium because my problem is most likely not enough stomach acid instead of too much. I had so much pressure in my chest last weekend, I was close to going to the er. With the digestive enzymes and giving up meat for now, it's a little better.

[AnonyousCda]

I have been gluten free for over a year but seem to be getting more abd pain and heartburn now. My holistic chiropractor found inflammation in my liver and then my gall bladder has been acting up too. I continue to eliminate more foods and am losing weight and energy levels are plummeting. I am now using digestive enzymes with every meal and have seen small improvement. I'm not normally very emotional but had to have a good cry last night over all the foods I've given up. My regular doctor is of no help at all. Not sure what else to do. I know how you feel Matt.

Did you do any other tests?

Try a little kefir milk.

[AnonyousCda]

Hey all,

I've been diagnosed celiac for about a year, and until recently, was living fine with the gluten-free diet. About a month ago, I started noticing stomach aches after drinking breakfast shakes, and eating cheese. I found out that dairy intolerance often comes with celiac, which would have been fine as well, except around the same time I started having stomach/abdominal pain after eating almost anything. It started with gluten-free/DF homemade chili, then gluten-free chicken fried rice, and before I knew it I had to cut almost everything out of my diet.

For the last 3-4 weeks I have been eating exclusively raw fruits/vegetables and poached chicken/turkey breast. Literally everything else that I've tried to reintroduce has given me abdominal pain. This includes all types of nuts, white rice, eggs, cod, salmon, peanut butter, even oven-roasted vegetables. I usually start feeling discomfort/tightness in my stomach around 30 seconds to a minute after eating any of these things.

Despite eating 2 avocados and 1-2 chicken breasts a day, I'm not getting enough fat in my diet, and have lost about 15 pounds (down to around 120 lbs. as a 6', 21 year-old male). I recently spoke with my dietician who recommended that I start trying a low FODMAP elimination diet. Thankfully, most of the things I had to eliminate were things I already couldn't eat anyways. However, this limits my diet even further, and I can't even tolerate most of the things that are supposed to be okay to eat on this diet. I have noticed no improvement since starting this diet, which leads me to believe that there is something else going on.

I have been taking multi-vitamins and probiotics daily for about three weeks but am currently losing hope, as none of my doctors/specialists have been able to give me a solid answer. The doctors that I have seen don't accept leaky guy as a legitimate medical condition and have sent me to a few different specialists instead, seeming generally clueless themselves. I am having a consultation for a colonoscopy soon, as well as for a cystoscopy (I apparently also have some sort of kidney/bladder blockage, maybe a stone. We're not sure if it's related to any of this yet). I have seen a naturopath and a dietician, but neither of what they've told me seem to be doing anything to solve the problem.

I feel worse every day, low energy, irritability and a general feeling of tiredness are pretty much constant and it's becoming difficult to deal with school as well as other commitments. Does anyone have any insight as to what could be going on with my body, or at least some general advice on what to do in my situation?

Let me know if you'd like any more information. Thanks for reading, and for any input you may have.

Matt

 

Did you do any other tests?

 interested.

Maybe stay away from vegetable oil, soy, cornstarch.  Gluten allergies can turn into multiple alllergies.

[LauraTX]

Did you do any other tests?

 interested.

Maybe stay away from vegetable oil, soy, cornstarch.  Gluten allergies can turn into multiple alllergies.

Celiac disease is not a gluten allergy. As you are new to the forum, please feel free to read around and check out Open Original Shared Link for scientifically accurate information.  

[mommida]

I was afraid of getting my gall bladder out too.  That all changed with the increasing pain and inability to eat.

 

Definitely go to the doctor and find out what issue is going on, because it will only get worse with out treatment.  If you need surgery to remove your gall bladder, you can research your surgeon and feel more comfortable.  (Funny thing, I did end up with the same surgeon that would have done the emergency surgery.)

 

By the way further symptoms I did have from gall bladder issues.

belching (freaked me out as I never really belched before)

severe and sudden weight loss

Just started to not even be able to hold down water

I feeling that I was being stabbed in the back right lower ribs.  (this pain will be in the lower right side ribs and can radiate front and back)

from some people's description I wasn't sure if there were kidney stone issues going on

 

I was having severe pain and went to the emergency room.  Freaked out by the mention of "exploratory surgery and it is probably your gall bladder" so I must have willed myself to not feel any pain~and walked out.  I went through stupid crap testing to confirm it was my gall bladder when I should have just had the HIDA test.  HIDA test brought on all the symptoms, so I knew surgery was needed.  Had the surgery and felt 100% about a day after.