Doctor Said It Is Not Celiac, Likely Ibs

[BuckeyeGirl]

I finally had my follow-up appointment with my doctor and she said it is not likely celiac disease. Here are the test results:

Tissue Transglut IgG <10 Negative (Reference <20 negative)

Tissue Transglut IgA <10 Negative (Reference <20 negative)

Gliadin Ab, IgA <10 Negative (Reference <20 negative)

They also tested my stool for various parasites, infection, etc. and it was negative for all, as well as negative for elevated fecal lactoferrin, which the doctor said indicates there is no sign of inflammation or celiac going on.

My diarrhea and other symptoms are on-going (please see this post for more details: https://www.celiac.com/forums/topic/94422-my-symptoms-very-frustrated/ ). After my bloodwork last week, I went gluten free. I had one day of no diarrhea earlier this week and since then, I've had an increase in the diarrhea. My doctor said it is likely irritable bowel syndrome and blew me off on all my other symptoms that I brought up. I'm really starting to feel depressed about it all.

Could anyone with more experience give me some input into the test results? Did they order the right labs?

[KMMO320]

I dont have answers because im in the same boat. Chronic D, headaches, muscle aches, fatigue, sinus.infecions...and all tests negative and they tell.me its Ulcers and IBS. I am not content with that. My GI even insists that Im not even gluten intolerant...yet when I went gluten-free for 3.weeks, I felt good.

[Kamma]

Hi, BuckeyeGirl...

Aside from the fact that some celiacs test negative, you might have non celiac gluten intolerance in which case the celiacs testing won't catch it.

Keep going on the gluten free eating and see if your issues subside substantially within the next few weeks. It takes a while to heal and for your body to slowly get healthy so you might have to be patient with yourself.

Also, you might want to find out what your total IgA is as some people are deficient in it and it will show as a false low or negative on the ttg IgA test.

[tom]

...

My doctor said it is likely irritable bowel syndrome and blew me off on all my other symptoms that I brought up.

...

Argh! I hate that Drs can think that saying IBS ends the conversation.

IBS is a symptom, not a diagnosis.

I Be Stumped is all they're saying.

[1974girl]

My family doctor recommends a gluten free diet for IBS anyway. My family has "IBS" everywhere and some of us have tested negative for celiac. So I don't know what is going on. My great-great-grandfather was sent home from the Civil War because his diarreah was contaminating the camp!

[Skylark]

Your doctor ordered the right tests. You can have diarrhea from gluten intolerance though. It's worth staying gluten-free for a few more weeks to see if things improve.

If not, have a look at the Specific Carbohydrate Diet Open Original Shared Link or if you suspect dairy sensitivity the GAPS diet Open Original Shared Link

Another thing to consider that gave my mom chronic GI trouble and "IBS" is fructose malabsorption. You would test for that by eating a low FODMAP diet for a few weeks.

[BuckeyeGirl]

Thank you for your feedback. I had a particularly bad day yesterday after eating out at Olive Garden (and I did order off the gluten free menu,so I don't know what the deal is). However, I looked into the GAPS diet and I started today with a modified version using the homemade chicken broth. I'm not following the intro version exactly, because I am adding in a few other non-grain foods (mostly fruits, vegetables, and a few nuts). But I am already feeling better! I know it's too soon to tell for sure, but I've only had one episode of diarrhea today, so it's promising.

[Skylark]

Glad to hear you had a good day! The GAPS book is well worth buying if you start to find the diet helpful. It explains why the diet works and all the details of how to really heal your gut.

[Green Eyes]

Although I have tested positive for celiac I have continued searching why I have been the only family member affected. I have two 2nd cousins which are on a gluten free diet because of celiac symptoms and have been successful. What I have found is "IgA Deficiency." If you are deficient in this antibody this can alter your celiac test results. Certainly something to check in to. My recommendation: if you have a doctor that is not searching for answers keep looking for a doctor who will. Took me a while to find a doctor but has been worth the search!!!

[BuckeyeGirl]

Although I have tested positive for celiac I have continued searching why I have been the only family member affected. I have two 2nd cousins which are on a gluten free diet because of celiac symptoms and have been successful. What I have found is "IgA Deficiency." If you are deficient in this antibody this can alter your celiac test results. Certainly something to check in to. My recommendation: if you have a doctor that is not searching for answers keep looking for a doctor who will. Took me a while to find a doctor but has been worth the search!!!

I completely agree with your comments regarding finding a doctor who is interested in helping to find the root cause of symptoms. This whole situation has completely turned me off to my family doctor. I already decided that it's time for me to find someone who is willing to really LISTEN to me and my concerns.

I also want to update everyone on my situation. After one good day on Sunday, I had a horrible day yesterday. The diarrhea was just SO bad and I can't understand why because I'm barely eating anything besides the chicken broth. After numerous episodes in the bathroom, at work no less, I had a major "freak-out" moment when I noticed some blood on the tissue paper. I went to the ER and they helped to schedule a colonoscopy, which took place this morning. The only visual abnormality noted was a polyp, which they are sending to pathology for confirmation. They seemed a bit surprised because I have no family history and I'm only 27-years-old. If nothing else, these symptoms have been a blessing in disguise because I'm quite sure I never would have had a colonoscopy until age 50 otherwise. The GI doc took several biopsies and is screening for numerous conditions- Celiac, Chron's, and several types of colitis. I don't know how accurate the Celiac biopsy will be because I have been gluten free for about 10 days now. Is that enough time to show a negative biopsy IF you truly do have Celiac?

Regardless of the outcome, I've decided that I'm going to continue trying the gluten free diet. I have too many other symptoms that could point to gluten sensitivity. I've noticed that I haven't had a single migraine or headache since going gluten free (even after a crying episode yesterday, which is usually a major trigger). I also feel "clearer" somehow and more alert. I've been having very vivid dreams every single night since going gluten free. Is this a common ocurrence? I used to never remember any of my dreams.

I will keep you updated on the test results!

[kareng]

Sorry to tell you that a colonoscopy cannot diagnose Celiac. Did they do an endoscopy at the same time? A colonoscopy goes thru the end of the digestive tract and sees that last part. The endo goes thru the mouth and looks at the top portion ( sm intestine). celiac is found in the small intestine.

[Skylark]

Don't freak out. Bright red blood on tissue paper is usually a small anal tear, probably irritation from all the diarrhea. Didn't they tell you that? Try a little diaper rash cream like Desitin to soothe your skin. Dark red or black clotted blood in your stool (can look like tar or coffee grounds) is the really bad kind because it comes from further up your colon or intestines.

Yes, I was much more alert off gluten. I didn't notice differences in dreams, but I did start sleeping a lot better.

If you had an endoscopy and celiac biopsies as well a the colonoscopy, they would see damage after only 10 days gluten-free. If not, you need to go back on gluten until you can get the endoscopy.

[BuckeyeGirl]

This forum is certainly a great source of information. They definitely didn't mention that they cannot test for Celiac through a colonoscopy and that is all I had done- not the endoscopy. In fact, the doctor explicitly said that she was testing for Celiac. This is so frustrating! Now, I'm wondering if she meant the blood test again. I had the blood testing done by my primary care physician a few weeks ago. She is in the same health system as the GI doc, but maybe the GI doc missed the fact that I already had it done. I am a little upset about this now...why wouldn't the GI doc just have done the endoscopy while I was already out for the colonoscopy?

[kareng]

. I am a little upset about this now...why wouldn't the GI doc just have done the endoscopy while I was already out for the colonoscopy?

I think that is an excellant question for the doctor.

[GFinDC]

Yep, it's a real good question for the GI. You don't have to have an endoscopy if you don't want. You can just go gluten-free and stay that way. The diet doesn't require a celiac diagnosis. And there is no treatment for celiac right now except the gluten-free diet anyway. Even if your testing came back negative, you should try the gluten-free diet for several months. The testing isn't perfect and false negatives do happen. Even on the endoscopy.

[BuckeyeGirl]

It is certainly a great question that I'll be asking the GI doc. I am honestly dumbfounded and very upset that the endoscopy was not done at the same time as the colonoscopy. I get very, very nervous during any type of procedure that requires anesthesia. I know most people don't find it pleasant, but I truly have symptoms similar to a panic attack just thinking about it, so it was a really big deal for me. And I was taken aback to learn that celiac cannot be diagnosed through a colonoscopy because the GI doc certainly made it seem like she was testing for it, along with everything else. My follow-up with her is next week, which will give me some time to cool off so I don't come across as a raving lunatic. I noticed the thread on self-diagnosing--no wonder so many people do! This is very frustrating. Even if the GI doc was unable to find anything through the colonoscopy and wants to proceed with an endoscopy, I would have to really think about going through with it.

My diarrhea continues to be severe today, which I'm not sure if the bowel prep from the colonoscopy or the colonoscopy itself could be contributing to. I'm continuing to follow a very bland diet with the chicken broth, nuts, some fruit, and not much else. I am going to cut out the fruit in case it could be fructose malabsorption, as one poster suggested. I am so worried about the weight loss that I've been experiencing, as I'm already thin to begin with and don't need to lose any more weight. I am praying that the diet starts working soon. Through research that I've been doing on other digestive disorders, it seems that some believe a gluten free diet can help with other disorders as well, although it may not be scientifically proven. I'm going to stick with it for now and see what happens. Despite the ongoing diarrhea, I do feel more rested and seem to be sleeping better. And still no headaches or migraines, even with all of this stress and that is very unusual for me.

[ravenwoodglass]

You need to be eating more than chicken broth, nuts and fruit. Can you add some chicken meat and maybe some rice or potatoes along with some well cooked veggies?

Also have you made certain that the broth is gluten free? Not all are.

If you are going to get the endo you do need to keep eating gluten until that is done. If you are done testing then do give the diet some time as we do take some time to heal.

You also need to make sure any meds you are taking are gluten free and make sure that you are doing what you need to do in your home to be safe like new dedicated condiments, new toaster and strainer for pasta etc.

I hope you are feeling better soon.