Not Sure If I Have Celiac Or Gluten Sensitivity

[Meggielynn13]

I have been having symptoms of diarrhea for at least a week at a time, really bad cramping, intolerance to most foods, constant pain and it also goes into constipation sometimes. This has been going on for three years. It all started from milk, then spicy foods, then acidic and citrus foods. All giving me diarrhea at least 3 times a week( but at least 5-6 times each of those times a week) . I'm also positive that since I have taken milk out of my diet and still having the same symptoms, I have a sensitivity or intolerance to gluten. I also have burning feeling in my large intestine in the lower part of my torso and also the same pain in my back that keeps me up at night. This has been interfering with my life and job and school and I just want answers. I also forgot to say I get fevers when having diarrhea, I'm also tired a lot of the time and wake up in the night because of my stomach pains and I get mouth sores a lot. I don't think I have ulcers inside my stomach and intestinal tract but I might... I went to the doctors the first time and was diagnosed as lactose intolerant but he also thinks I have IBS. With IBS you don't have fevers, continual cramping etc. they did a flexible sigmoidoscopy and an EGD. They determined that I have a hiatus hernia, gastritis, diverticulosis after doing the flex sig and egd. They also think I am developing colitis because of the amount of inflammation in my colon. I will know more once they get back the biopsys back. They also did a few tests to see if I had celiacs and chrons and uc.... Im going back to the doctor on Monday and I'm gonna have them run blood tests and other tests cause inflammation in my stomach, sm intestine and colon aren't normal. Ibs is what they said is probably what's causing my problems but when you barely eat anything but eggs,toast,chicken,pasta and rice and still have symptoms; ibs is their way of telling me that they are clueless. I think I'm gonna have them run a celiac panel on me too cause the symptoms I have are similar to what i have.

My symptoms are:

Diarrhea

Constipation

Chronic indigestion

Chronic bloating

Poor appetite

Abdominal cramping, pain, and distention

Mouth ulcers

Lactose intolerance

Weight loss

Not absorbing nutrients properly

GERD

Messed up menstrual cycle

Fatigue

Slight anemia

Elevated liver enzymes

-Anxiety for the past 3-4 years

-sleeping problems- i either sleep too much or not enough

-poor circulation- always cold, never warm enough even with blankets and layers

Any help to steer me in the right direction would be greatly appreciated. This has been going on 3 years too long and I wanna get it straightened out asap. I am going to the dr on Monday and hopefully he will run the tests I want them to because otherwise im going to end up doing the gluten free diet anyway to make myself feel better.

[mushroom]

Hello, and welcome to the forum.

Well, it sounds like you are smarter than your doctors. I would agree with your self diagnosis - you do not tolerate gluten. I am glad you will be having a doctor visit on Monday, and yes, I would insist on the celiac panel. Now this may not turn out positive, because 1. the is a 20% error rate of false negatives, and 2. you may have non-celiac gluten intolerance. Most doctors are just coming on board with this diagnosis, many do not yet even know that such a thing exists, but it does. I will look for a reference for you that you can print out. I presume that they did not think to do a celiac biopsy when they did your egd??? Pity! And you are right about IBS - it is a description of symptoms, not a diagnosis. It is given when they can't figure out what else it is

You sound pretty switched on to me Don't try to be too much of a "smarty pants" to antagonize the doctor, because you want him on your side, but do print out the list of your symptoms and say, I think these symptoms all match up with celiac disease. Would you test me for it?

Good luck on Monday and let us know how it goes.

[Meggielynn13]

Thanks so much for your post. I have been through every test you can imagine. they sent me for the flex sig and egd because they wanted to rule out crohns and ulcerative colitis, which i think is a stretch I believe they did do a biopsy for celiacs when they did the egd. I'm going to get the paperwork and see exactly what it says because even slightly elevated means good bye gluten for me. I absolutely want the doctors on my side since I have seen so many of them they probably think I'm crazy .. I'm bringing my dad with me so I can have another opinion on my appointment so he can listen as well.

i'm hoping to get answers soon because I want to live my life and not be a prisoner in my own body because of this.

[mushroom]

Here are the references I promised:

http://www.celiac.co...rent/Page1.html

Open Original Shared Link

http://online.wsj.co...eTabs%3Darticle

Good idea to take your dad for some backup support so you don't get bullied

[Meggielynn13]

I went to the doctor today and all of my tests including the biopsy they did to check for celiac came back negative. I totally expected the negative result. They didn't want to do the celiac panel because the biopsy is more conclusive. I'm going to go gluten free though because I've taken everything out of my diet that they told me and I'm still sick. So I've come to the conclusion that it's the pasta, bread,cookies and anything else that has added gluten to it. Hopefully this will be a good change but I know it will be really hard to get used to.

[eatmeat4good]

It will be hard, but you can do it. You sound very determined to get your health back and I applaud your spirit.

I bet you Dollars to Donuts you will feel way way better soon!

[xabbar]

I went to the doctor today and all of my tests including the biopsy they did to check for celiac came back negative. I totally expected the negative result. They didn't want to do the celiac panel because the biopsy is more conclusive. I'm going to go gluten free though because I've taken everything out of my diet that they told me and I'm still sick. So I've come to the conclusion that it's the pasta, bread,cookies and anything else that has added gluten to it. Hopefully this will be a good change but I know it will be really hard to get used to.

Hi Meggielynn13,

I was just reading your experiences and wish you the best of luck with the diet. I was diagnosed celiac 2 years ago after years of bad health pain etc. My nephew who is 12 next month has suffered too and afer a negative biopsy and negative gluten sensitivity panels and everything else in between, my sister ordered the Enterolab testing. He is conclusively gluten sensitive, dairy intolerant and has the genes for celiac.

I suggest you do these tests, its worth knowing for sure.

Good luck

xabbar

[Meggielynn13]

I'm back after trying to figure out my name and password on here. I made my password so hard I couldn't even figure it out. Anyway, my GI told me that it wouldn't be a good idea for me to go gluten free because of all of my other health issues including gastritis, elevated liver enzymes from my gallbladder functioning at a rate of a 65 year old(12% ejection rate 0_0, which I had to get out after a HIDA scan in October) and a hiatial hernia which is causing my GERD. At 23 I shouldn't have all of these problems and also should not have listened to this GI. After having my GB out I felt better than I did before but recently( about 2 months after the surgery) I have had the same pains in my side that I had from my GB, pains underneath my stomach where my small intestine and large intestine are. I get it after eating eveything now, just as I did before I had my GB out. After reading this forum for quite some time I am coming to the realization that Celiac or a Gluten sensitivity could have killed my GB. No 23 year old I know other than one of my friends who has other auto-immune disesases has had to have their GB out. My ejection rate was even worse than my friend who has an auto-immune disease( hers was just below the level where they might remove it or might not remove it). I'm going to get tested again when I go to the doctor for my yearly physical in January. Hopefully they will give me some answers. I'm still having the same symptoms: diarrhea, recent vommiting, really bad stomach pains, immediately going to the bathroom after I eat sometimes, sores in my mouth and lips, really itchy eyes, recurrent yeast infections ever since my GB surgery, fatigue,abdominal cramping, Tryglicerides higher than normal, lactose intolerance, really bad anxiety( they put me on an anxiety/depression medication a while back), and weight gain( I have gained about 50 pounds in the last few years). I hope someone reads this and helps me realize that I do have something wrong with me and it's not all in my head like the doctors think. I had to pull lots of strings to even get a HIDA test done, which brought them to the diagnosis that I had to get my GB out, which I knew all along. I would really appreciate answers again. Thanks so much! I love reading all of the answers on this forum, it makes me feel like I'm not alone

[mushroom]

So, MeggieLynn, have you actually given the gluten free diet a trial? When you last posted in April that was the plan. Was that when your doctor talked you out of it? If you haven't tried it I can't think of a better time. I am not a doctor, but I have never heard of the gluten free diet being harmful to anyone except if they do not eat a wholesome balanced diet whilst on it.

[Meggielynn13]

I started it back in April but they told me it wouldn't be a good idea and did some blood work. That resulted in seeing that my liver enzymes were high and my liver was swollen. They put me on liver medication for months and it made everything worse (that's how I found out about the GB). I should have just stayed with the diet but knowing that it might not be the problem makes me not want to continue with being gluten free. I'm just afraid that it won't make me feel better and I'll be sick like this forever.

[mushroom]

I started it back in April but they told me it wouldn't be a good idea and did some blood work. That resulted in seeing that my liver enzymes were high and my liver was swollen. They put me on liver medication for months and it made everything worse (that's how I found out about the GB). I should have just stayed with the diet but knowing that it might not be the problem makes me not want to continue with being gluten free. I'm just afraid that it won't make me feel better and I'll be sick like this forever.

Nothing ventured, nothing gained Would you rather live sick forever knowing there was a chance you could feel great just by avoiding gluten?

[maramelia]

I started it back in April but they told me it wouldn't be a good idea and did some blood work. That resulted in seeing that my liver enzymes were high and my liver was swollen. They put me on liver medication for months and it made everything worse (that's how I found out about the GB). I should have just stayed with the diet but knowing that it might not be the problem makes me not want to continue with being gluten free. I'm just afraid that it won't make me feel better and I'll be sick like this forever.

meggie, sorry for my question, I'm not from US, and english is not my native language. It was not clear for me:

first: DID YOU DO OR NOT THE GLUTEN FREE DIET?

second: if you did it, for how long? did you fell better with NO GLUTEN?

[Meggielynn13]

I did it but not for very long because of the blood work they did and told me it was my liver that was making me sick. I think I will be trying it once I get tested. I know I should start now but I want a medical answer because I really still feel like doctors don't believe me.

[mushroom]

I did it but not for very long because of the blood work they did and told me it was my liver that was making me sick. I think I will be trying it once I get tested. I know I should start now but I want a medical answer because I really still feel like doctors don't believe me.

Are you going to the same doctor who refused sthe blood panel before? If it is a different one, like a PCP, definitely ask for the celiac blood panel, and make sure she orders the DGP (Deamidated Gliadin Peptide) which is the newest and most specific for celiac and also a total serum IgA.. If the tests come back negative there is not much point in another biopsy because many gluten intolerants simply cannot "pass" the celiac test, whether blood or biopsy, but nonetheless gluten is their problem (about 20%). With your prior list of symptoms I am quite confident that you will improve on a gluten free diet. And yes, , so many people have lost their gallbladders to gluten.

Do get back to us in January and let us know how everythng works out. And have a happy holiday season. Remember to keep eating a full gluten diet over Christmas (aren't you lucky? ) and until you have had your tests. Good luck.

[Meggielynn13]

Are you going to the same doctor who refused sthe blood panel before? If it is a different one, like a PCP, definitely ask for the celiac blood panel, and make sure she orders the DGP (Deamidated Gliadin Peptide) which is the newest and most specific for celiac and also a total serum IgA.. If the tests come back negative there is not much point in another biopsy because many gluten intolerants simply cannot "pass" the celiac test, whether blood or biopsy, but nonetheless gluten is their problem (about 20%). With your prior list of symptoms I am quite confident that you will improve on a gluten free diet. And yes, , so many people have lost their gallbladders to gluten.

Do get back to us in January and let us know how everythng works out. And have a happy holiday season. Remember to keep eating a full gluten diet over Christmas (aren't you lucky? ) and until you have had your tests. Good luck.

I'm going back to my primary(a woman). My GI was the worst doctor I have ever been to. The doctor that figured it was my GB is the head doctor of the doctors office I have been going to since I was born. I hope I improve on a gluten free diet. Maybe if I had gone on the diet sooner I'd still have my gallbladder. At least for Christmas, Hanukkah and my birthday next month I'll be able to eat what I want but I won't feel that great . Thanks, I hope I actually get the answers I'm looking for this time. Merry Christmas!

[Meggielynn13]

So I got some good news and some bad news.

Test results:

DGP IgG-Neg <.4 Eu/ml

DGP IgA Pos 8.6 EU/ml

TTG IgA-Neg 1.1 U/ml

EMA IgA- Negative

total: 329 mg/dl

So I'm positive for the new test which I was hoping for mostly so I can convince myself to actually do the Gluten Free diet.

Hopefully going to the GI soon but I have to go back to the stupid GI doctor that didn't think there was anything wrong with me especially not celiac or GB disease(ended up having both hmm).

Now for the bad news. My liver enzymes were AST:127 (normal is between 15-37) and ALT: 149 (normal is between 30-65). They do not know what is causing that and that is what is freaking me out. I know its not going to help me by doing this but that's how I react to different things. Hoping things get better once I go to the GI and hopefully I can see the DR that specializes in Celiac Disease cause this clown of a doctor doesn't know about anything other than IBS.

Hopefully anyone reading this could give me insight to what any of this could mean, i'd really appreciate it. These results are a lot to take in, especially at 24 years old

[mushroom]

Well, hurray for the good news, and BOO! for the bad. But you might experience an improvement with your liver symptoms once you go gluten free - I know many people have. Gluten is so insidious the way it wriggles into every part of our bodies. I hope you get to see Dr. Gusten (I was reading your other thread too ). I went to a doctors' group once which tried to insist I could not change doctors. I just said that I would go somewhere else then, and they relented.

[pricklypear1971]

Well, Celiac (or Celiac eating gluten) can stress your liver and I believe there is "autoimmune liver diease". Open Original Shared Link

I bring up the autoimmune liver disease because if you have one autoimmune disease you are likely to develop another, unfortunately.

I'm sure going gluten-free won't hurt your liver, and it may help. Open Original Shared Link

[Meggielynn13]

I'm going to the GI soon but I'm not sure if I should continue eating gluten until then. It's only day two and I'm super hungry no matter what I eat. This is probably normal but I'm kinda worried. I'm not sure if I'm having another endoscopy but I hope not cause that won't prove anything especially if I stop eating gluten now. Hopefully they call me today so I can set up my appointment for ASAP.

[IrishHeart]

I'm going to the GI soon but I'm not sure if I should continue eating gluten until then. It's only day two and I'm super hungry no matter what I eat. This is probably normal but I'm kinda worried. I'm not sure if I'm having another endoscopy but I hope not cause that won't prove anything especially if I stop eating gluten now. Hopefully they call me today so I can set up my appointment for ASAP.

I know we talked on the other thread about Dr. G. but I am thinking those guys will want to scope and biopsy you, hon. If that is the case, stay on gluten. Especially since Dr. whatshisface was so adamant it was not celiac disease before.

I had a swollen liver and elevated enzymes for a while, but they normalized after being gluten-free.

When you call, tell them you prefer to see Dr. G as he was highly recommended by one of his patients. (well, 2 since another one told ME about him)

PM me if you want more info. I'll help you any way I can.

[Meggielynn13]

Tomorrow is the day I hopefully find out what's going on with me. Hoping to not have to go through an endoscopy and other scopes again. Once was enough . I'm so nervous and I can't sleep because my stomach is in knots. I know things could be worse but I just started school again at a local community college and will be graduating and looking for new job opportunities in December. I just want answers so I can work at a job without getting looks cause I go to the bathroom so many times a day. I also hope this doctor won't be a jerk like he was last time I saw him. Oh to have nothing wrong with you is my favorite line... But not even 5 months later I'm down an organ. Yeah, this doc knows his stuff, being the best "gallbladder specialist" in the office. UGH. Sorry to any one reading for all of my negativity but I need to vent before I explode on this stupid doctor tomorrow!

[AVR1962]

Tomorrow is the day I hopefully find out what's going on with me. Hoping to not have to go through an endoscopy and other scopes again. Once was enough . I'm so nervous and I can't sleep because my stomach is in knots. I know things could be worse but I just started school again at a local community college and will be graduating and looking for new job opportunities in December. I just want answers so I can work at a job without getting looks cause I go to the bathroom so many times a day. I also hope this doctor won't be a jerk like he was last time I saw him. Oh to have nothing wrong with you is my favorite line... But not even 5 months later I'm down an organ. Yeah, this doc knows his stuff, being the best "gallbladder specialist" in the office. UGH. Sorry to any one reading for all of my negativity but I need to vent before I explode on this stupid doctor tomorrow!

MeggieLynn, I followed the posts and replies here and just wanted to add. Before I went gluten-free my gallbladder, pancreas, and spleen were inflamed. My blood pressure was high (never had it before), my heart palpitations were nuts, terrible GERD, and blood calcium levels. Like you, lots of tests......docs thought it was due to my parathryoid.....on & on, it was a wild goose chance and I was not getting any better.

Several family members had their gallbaldder taken out so I figured it was my turn. I know they had a hard time before and after they had their gallbladders taken out, had to learn what they coudl and could not eat as certain things would upset their stomach. In my case, ultrasound showed it was healthy, they said they would watch it.

Finally, desperate, I went off gluten on my own encouraged by a family member who is gluten intolerant. It took awhile. I was in bad bad condition. First thing that happened is my calcium level went into normal range, almost bordering low. Doc then thought my initial bloodwork may have been no good(?), basically he could not explain. I had to get my supplements right but then my high blood pressure went away, my heart palpitations stopped. It took 5 months on Nexium and shots of Pepto, on a low acidic diet to get to a point that was stomach wasn't burning but it all happened on a gluten-free diet.

Right now, I am nearly one year from the day I went to ER. Docs have no explanation except they see the results of what a gluten-free diet has done for me. My speach is clearer than it has been in years. I can actually think without struggling now. No more double vision. I can drive without feeling my lane is too small. My dizziness went away.

I tell you my story in hopes that it might help you. It will be interesting to see if docs can give you an answer. gluten-free might not be the answer for you like it was for me, there might actaully be something else going on there and you are wise to see if docs can find that out. But if not, I would suggest giving the gluten-free diet a real try. It might be the answer for you too.

[IrishHeart]

Tomorrow is the day I hopefully find out what's going on with me. Hoping to not have to go through an endoscopy and other scopes again. Once was enough . I'm so nervous and I can't sleep because my stomach is in knots. I know things could be worse but I just started school again at a local community college and will be graduating and looking for new job opportunities in December. I just want answers so I can work at a job without getting looks cause I go to the bathroom so many times a day. I also hope this doctor won't be a jerk like he was last time I saw him. Oh to have nothing wrong with you is my favorite line... But not even 5 months later I'm down an organ. Yeah, this doc knows his stuff, being the best "gallbladder specialist" in the office. UGH. Sorry to any one reading for all of my negativity but I need to vent before I explode on this stupid doctor tomorrow!

If the doc does not take the POSITIVE Celiac blood work seriously, tell him you wish to see another doctor in the practice. Don't be afraid to speak up, hon. I'm thinking of you and I hope you get the answers you need.

[Meggielynn13]

So today's appointment was a waste of my time and that is unfortunate .

The first thing he goes into is so, I think you're lactose intolerant. How can you know that from my bloodwork that doesn't even mention a test for lactose intolerance. I have also known that I have been that way for 3 plus years. He then says something which is really stupid I think you should stop drinking milk and try a lactose free diet now, I haven't had milk in 3 years and he knows that from my file. I only eat cheese without lactose, soy and almond milk, and yogurt none of which have lactose.

Then he goes into my celiac panel and liver bloodwork. so the test you came up positive on is one of the older tests and is really irrelevant in today's day and age. The positive marker that came back shows that you could get it sometime in your life. at this point I'm ready to jump over the desk and smack some sense into him :-X . If it was irrelevant, why would the lab use it and I believed that this test was one of the newest (dgp iga). And then he wants to send me for lactose intolerance testing, which I declined because I know the answer is yes and then he is sending me for the third ultrasound on my right side in less than a year. And then I have to go back to see him once I try the lactose trial and the ultra sound comes back. Then he said we could look at me going gluten free which he pretty much doesn't think I can do cause its sooooo hard according to him.

At this point I'm just gonna do the gluten free diet once I go back to see him even if he says not to cause I know my body better than him. This whole situation is really working me up but i just have to do what's best for me especially since I found out i'm doing my internship for school in Disney in a year. Can't really work in the parks or really anywhere and have to go to the bathroom 10 times in an 8+ hour shift.

Thanks for listening everyone and thank you to all that have given me advice. I really appreciate it cause no one understands around here other than my boyfriend

[mushroom]

The DGP is the newest AND the most specific for celiac disease. Honestly, what rock did this doc crawl out from under? Just do the diet, and get better, why don't you?? His is obviously not advice you should be following IMHO.