What Is Wrong With Me?

[Simona19]

Hi!

On May 6. I had a severe pain and muscle spasm on a left side of my body. I went to the Emergency Room. Doctor ordered a blood work and CT scan of the abdomen. They gave mi 2 injections, and the spasm had stopped. I had gastritis- inflamed stomach. I ate only plain bread and clean water for four days. Anything that I put in my mouth was making me sick. I didn't felt hungery.

Next step was a visit to my doctor. He increased my pills -Nexium from 20mg to 40mg, and he send me to gastroenterologist. After two weeks Gast. did the upper endoscopy (result: mild chronic gastritis, acid reflux disease and small bowel biopsy: The findings are nonspecific and are associated with early celiac disease, Marsh I), and week later colonoscopy which was normal. Gast. ordered a blood work for celiac disease. I wasn't eating gluten for two weeks before the test and for a month I ate just fruit, rice, chicken breast, potatoes and later some gluten-free breadstick, bagels, vegetable soups, plain backed potatoes, cereals and rice milk. The test came back negative for the Celiac disease. Gast. send me for a genetic test for Cel. disease and ex-rays of the upper GI track. The blood work came back negative, but the laboratory didn't knew how to do this test.I waited 40 minutes for them to find out what to do. Was the result right? The small bowel was perfect. I just had a very rapid transit of contrast through the small bowel with transit time of less than 15 minutes (result: findings may represent a malabsorptive disorder such as sprue). My regular doctor ordered HIDA schan to find out if my gallbladder is inflamed - negative. I went to a allergiologist who performed a test for a milk and gluten allergy. Result: milk allergy - I should avoid any milk, casein... I also had a delayed reaction to wheat, after 30-45 minutes and lasted for more than one day - strictly avoid gluten. After two and half months I'm still not ok. I can't eat any small amount of fat, or sugar. Even banana is making me sick. I'm experiencing fatigue, headache, weakness, drowsiness and very bad pain on the left side after eating them. I have desire to lie down because I feel that any minute I will faint. I don't have diarrhea, abdominal cramping and bloating anymore, which is good. I lost 22 pounds. I'm thinking that my pancreas is damaged too, and isn't working properly. Could it be a pancreatic insufficiency? Today I received another results from a blood work to check the pancreas ( gastrin level was elevated) and malabsorption (it was negative). I also had some fat in my stool ( I ate only potatoes with two spoons of milk free butter, and after I was very sick). Third doctor told me that he don't know what is wrong with me. I should go back and eat gluten again, and he will test me later. He also increased Nexium from 40mg x 1 to 40mg twice a day. I asked him why I'm always very sick after eating fat and sugar? His answer was "I don't know". And now what? What should I do? Any suggestions?

I also have many food alergies - nuts, kiwi, honey, orange, pepermint and milk which I knew prior the testing.

[cyberprof]

  On 7/23/2010 at 1:46 AM, Simona19 said:

Hi!

On May 6. I had a severe pain and muscle spasm on a left side of my body. I went to the Emergency Room. Doctor ordered a blood work and CT scan of the abdomen. They gave mi 2 injections, and the spasm had stopped. I had gastritis- inflamed stomach. I ate only plain bread and clean water for four days. Anything that I put in my mouth was making me sick. I didn't felt hungery.

Next step was a visit to my doctor. He increased my pills -Nexium from 20mg to 40mg, and he send me to gastroenterologist. After two weeks Gast. did the upper endoscopy (result: mild chronic gastritis, acid reflux disease and small bowel biopsy: The findings are nonspecific and are associated with early celiac disease, Marsh I), and week later colonoscopy which was normal. Gast. ordered a blood work for celiac disease. I wasn't eating gluten for two weeks before the test and for a month I ate just fruit, rice, chicken breast, potatoes and later some gluten-free breadstick, bagels, vegetable soups, plain backed potatoes, cereals and rice milk. The test came back negative for the Celiac disease. Gast. send me for a genetic test for Cel. disease and ex-rays of the upper GI track. The blood work came back negative, but the laboratory didn't knew how to do this test.I waited 40 minutes for them to find out what to do. Was the result right? The small bowel was perfect. I just had a very rapid transit of contrast through the small bowel with transit time of less than 15 minutes (result: findings may represent a malabsorptive disorder such as sprue). My regular doctor ordered HIDA schan to find out if my gallbladder is inflamed - negative. I went to a allergiologist who performed a test for a milk and gluten allergy. Result: milk allergy - I should avoid any milk, casein... I also had a delayed reaction to wheat, after 30-45 minutes and lasted for more than one day - strictly avoid gluten. After two and half months I'm still not ok. I can't eat any small amount of fat, or sugar. Even banana is making me sick. I'm experiencing fatigue, headache, weakness, drowsiness and very bad pain on the left side after eating them. I have desire to lie down because I feel that any minute I will faint. I don't have diarrhea, abdominal cramping and bloating anymore, which is good. I lost 22 pounds. I'm thinking that my pancreas is damaged too, and isn't working properly. Could it be a pancreatic insufficiency? Today I received another results from a blood work to check the pancreas ( gastrin level was elevated) and malabsorption (it was negative). I also had some fat in my stool ( I ate only potatoes with two spoons of milk free butter, and after I was very sick). Third doctor told me that he don't know what is wrong with me. I should go back and eat gluten again, and he will test me later. He also increased Nexium from 40mg x 1 to 40mg twice a day. I asked him why I'm always very sick after eating fat and sugar? His answer was "I don't know". And now what? What should I do? Any suggestions?

I also have many food alergies - nuts, kiwi, honey, orange, pepermint and milk which I knew prior the testing.

No, please don't go back to eating gluten! Your later tests were negative because you were off gluten. If you are Marsh I (as I was) you do have celiac, but your damage is less than others (that's a good thing). In my opinion, if your docs can't find anything else, you just have a messed up system and it will get better soon.

After diagnosis, I couldn't eat any fat for a month or so. Your system is rebelling.

I would respectfully suggest eating "whole" foods for a while. Meat, fish, shrimp, eggs (no dairy), veggies, fruits, potatoes (white and sweet). NO processed foods, no gluten-free treats (later!), nothing that could be contaminated (the learning curve is steep). No rice or anything that could be contaminated. No sugar. No fats (except avacados, which have good fat). Try that and hopefully your system will settle down soon.

After diagnosis, I had about $10,000 of CT, MRI etc. tests done for residual pain and problems and it turns out that it was just accidental gluten messing me up. I hope you feel better soon.

[Skylark]

I agree with not going back to gluten, particularly with the results your allergist found. Between the Marsh I biopsy and a delayed reaction to gluten it's clearly a problem for you. celiac blood tests have a high false positive rate even in people eating gluten. It almost sounds like you need to seek a second opinion or find someone with more expertise in celiac.

As cyberprof says, some celiacs are really, really sensitive to even traces of gluten and need to stick to naturally gluten-free foods.

[ravenwoodglass]

I agree with the others. I think Skylard meant to say celiac blood tests have a high false negative rate not positive. Thankfully you were only at Marsh 1 when diagnosed and your gluten free diet has shown that healed the damage. It can take time to heal, stay on the diet and do delete dairy for a bit. You can add it back in when you are feeling better.

Welcome to the board and do stay gluten free.

[lucia]

Your story sounds familiar after hanging around this board for awhile. Gluten can really do a number on our bodies. The immune reaction of a celiac (& yes, you qualify) means that our bodies behave like gluten is poison. Just imagine that you've been trying to digest poison your whole life. No wonder you're so sick.

The good news is that once we stop putting gluten into our bodies, we can recover. That your second endoscopy didn't show celiac damage means that your body has started healing. That's great news! It will only get better from here.

[Skylark]

  On 7/23/2010 at 12:23 PM, ravenwoodglass said:

I agree with the others. I think Skylard meant to say celiac blood tests have a high false negative rate not positive. Thankfully you were only at Marsh 1 when diagnosed and your gluten free diet has shown that healed the damage. It can take time to heal, stay on the diet and do delete dairy for a bit. You can add it back in when you are feeling better.

Welcome to the board and do stay gluten free.

Good catch! Thanks.

[vbecton]

  On 7/23/2010 at 1:46 AM, Simona19 said:

Today I received another results from a blood work to check the pancreas ( gastrin level was elevated) and malabsorption (it was negative). I also had some fat in my stool ( I ate only potatoes with two spoons of milk free butter, and after I was very sick).

My doctor also doesn't know what's going on with me besides having Celiac. I've got a pretty serious case of malabsorption that doesn't seem to be getting better off gluten. In fact, it's probably worse. I follow a very strict, non-processed foods diet (aside from a 1/2 slice of bread every few days or week). I eat a ridiculous amount of protein (150g) and feel like I haven't eating ANYTHING all day. Somedays are worse than others. I've got a pill camera test on Tuesday to check for Refractory Celiac, or other GI issues. I'm off gluten, don't intend to eat it again, but this weight loss and fat in my stool is for the birds! I seriously ate 5000 calories yesterday and went to bed hungry. PUH!

I hope you find some relief soon. Your malabsorption seems to have different symptoms with the not being hungry, but your reaction to foods sounds the same as mine. This could be all part of the healing stage, but it's definitely taxing and irritating.

[sandsurfgirl]

Doctors have many misconceptions and ignorant concepts regarding celiac and one of the worst ones is that they think you will get better quickly after going gluten free. It can take months and you can go through all sorts of weird phases during the withdrawal and healing phase.

I found an article a long time ago about how gluten acts like an opiate on the brain and celiacs go through a true withdrawal process like a heroin addict. One more lovely thing to add to our list of lovelies.

Many of us, including me, will go through phases where we can't eat all sorts of foods and I had a period where every single thing I ate made me sick. I've seen people on here freak out and think they are intolerant of everything and quit eating all sorts of stuff. I just waited it out and it did pass in a couple of weeks.

I had small improvements all the time when I went gluten free but I didn't feel really better until 5 months and not great until 6 months gluten free.

Stay the course. Many find in the beginning that they have to cut dairy, soy and nightshades. Tomatoes gave me a reaction like gluten for awhile and now I eat them just fine. I have no idea why that happens. Soy and dairy are still a problem for me and might always be.

[vbecton]

  On 7/24/2010 at 5:43 PM, sandsurfgirl said:

Stay the course. Many find in the beginning that they have to cut dairy, soy and nightshades. Tomatoes gave me a reaction like gluten for awhile and now I eat them just fine. I have no idea why that happens. Soy and dairy are still a problem for me and might always be.

I always love reading your posts. You have a great sense of managing Celiac. I think most of my issues will subside over time and it's just something I need to wade out. But, I've got this looming feeling like there is one more thing going on that needs to be pinned down. Then I can relax .

And I'm glad you mentioned that about the foods. I was getting worried since I'm reacting to more things now than ever. I've cut out the biggies, but I'm sticking it out with the rest. I love my food way too much!!!

[jackay]

You could have a fructose or candida issue going on, too. There is a lot of information in this forum about both. My symptoms are completely different than yours. When I went off gluten, my anxiety and depression went away. However, it seems that my insomnia, headaches, muscle pain and back pain were from candida and not from gluten.

[Simona19]

  On 7/24/2010 at 6:43 PM, jackay said:

You could have a fructose or candida issue going on, too. There is a lot of information in this forum about both. My symptoms are completely different than yours. When I went off gluten, my anxiety and depression went away. However, it seems that my insomnia, headaches, muscle pain and back pain were from candida and not from gluten.

I have been testet for candida two months before I went to the emergency room. In december I went to my dentist with tooth ache. She did the rooth canal, but I had very bad infection and I was on the two antibiotics for almost three weeks. Month after that I was sick again. I had sinusitis, bronchitis and my astma got very bad too. I was put on very strong antibiotics again, but I had very bad reaction to them. My doctor had changed them for something diferent. I was also on the prednison and two spays to heal my lungs. I was very sick, dizzy, weak, and didn't have any apetite. What I ate was just one piece of bread with my medications, and drank tea and plain water. I had diarrhea 6-10 times a day. I didn't knew what was wrong. I comlained to my doctor, and she ordered a test for candida which came back negative.

[Simona19]

Thank you for your words of encouragement. I realized that before I stopped eating gluten I also wasn't able to eat. Even plain water was making me sick. After month on gluten free food I was able to eat more things without any trouble. Today my stomach still isn't able to process any fat and sugar. I also have cut out almost all processed gluten-free products after somebody had mentioned that in their posts. I feel much better. I hope that all this will get better soon, and I will be 100% again.