Newly diagnosed IBS for 12 years

[JonBNF]

For the past couple months I've been having upper right abdominal pain that keeps getting dismissed as IBS. I have had 3 colonoscopies and endscopies roughly 8-10 years ago everything always came back negative and always left with an IBS diagnosis. I've dealt with constipation and pain for the past 12 years. But for the past week I suddenly became fatigued went to drs er and been dismissed as having anxiety because my blood work came back normal. But for the first time ever I got a call and was told the blood work for celiac disease came back positive. Is it possible I've had this the whole time? If so is my damage so far gone cause of the extended length of time that I may not heal properly or develop cancer or some other awful disease or is this most likely a new onset of problems and I still have IBS? Glad I found this forum and I thank everyone for any support. Also how long till the fatigue starts to subside a bit. I'm having trouble just getting out of bed. 

[cyclinglady]

Welcome!  

I am so sorry that it took you so long to get a proper diagnosis.  Unfortunately, it is so common.  Have you had celiac disease all these years?  Who knows?  But I would guess yes!  

Now that your blood test was positive, are you going to a GI for an another endoscopy (this time to check the status of your villi)?  If so, keep eating gluten daily until the procedure (or you have the pathologist's report in hand!)  

It takes a very long time for those with undiagnosed celiac disease to develop something like cancer.  So, I would not worry about it.  Focus instead of healing, learning about the gluten-free diet (and that does not include all that gluten-free processed junk food), gentle exercise and rest.  Read our Newbie 101 section for some valuable tips from folks who have walked in your shoes.  Look for hidden sources of gluten and cross contamination.  Do not eat out until you have mastered the diet and are feeling good enough to take a gluten hit.  

I bet your IBS (a.k.a. "I Be Stumped") diagnosis will resolve once you go gluten free.  It will take time.  Most of us take a year or longer to completely heal (at least for symptoms).  

Questions?  We are here to help each other!  

 

[JonBNF]

Thanks for the response. I'm really weak right now, that came on suddenly which prompted the blood test. I lost 15 lbs in about 2 weeks. Is there any thing particular I can eat that is easy to absorbe to help bring back some energy. Also I get these sort of shocks when I start to fall asleep. Also I've been fidgeting a lot due to the anxiety and when I stop and just sit there calmly I feel like my insides are being electrically charged. Is this due to the weight loss and fatigue and will it subside?

[GFinDC]

Hi Jon,

It is very possible you had celiac disease for years.  The testing for celiac is not perfect yet, we are still waiting on the tricorder from Star Trek to appear.  Rats!

Celiac can cause damage to the gut lining (villi) that absorb nutrients.  So fatigue is a common symptom.  I think a good multivitamin might help some,  just make sure it is gluten-free.  Cutting out dairy for a while may help GI symptoms.

Your shocking symptoms could be related to lack of B-vitamins.  B vitamins are needed by nerves to function correctly.  So please try stocking up on a good B complex.  B-12 is sometimes a problem.

You don't need to eat a lot of gluten for the testing.   A slice of bread a day is enough.  Easy to digest foods are generally well cooked veggies, meats etc.   Digestive enzymes and Betaine HCL may help some.  Probiotics should help but some of them have been found to have gluten contamination.  So natural probiotics like sauerkraut might be safer.

I suggest avoiding sugary things as they can increase bacteria growth leading to gassiness and pain.

You could try some oily fish like mackeral, sardines, salmon or tuna also.  Those fish have a good amount of vitamin D in them which is hard to get if you are mal-absorbing.  Labdoor website has  listing of vitamin brands that are tested good.

I suggest avoiding caffeine for now also.  Caffeine puts a load on your system (highs and lows) that don't help fatigue.

Pepto Bismol may help with pain, also peppermint tea or peppermint Altoids can help get gas out.  I tend to have Pepto and milk of magnesia in the medicine cabinet always.  Plain aspirin helps pain also.

Welcome to the site Jon.

[JonBNF]

I'm having a lot of anxiety. My symptoms really took off after I took 2 omeprazoles. Now I'm doing research on auto immune liver disease and all my symptoms point to this. Is it possible my blood test doesn't mean celiac but it means liver disease? Help! 

[cyclinglady]

Get an endoscopy to confirm celiac disease if at all possible.  celiac disease can impact so many of your organs, including  the liver.  Most liver issues will resolve on a gluten free diet.   

Anxiety is huge.  So, is the tingly and weird sensations that you have been experiencing.  Nerve damage is real (so is cognitive damage).  This might be attributed to malnutrition as gluten-free in DC suggested.  

So, call your GI doctor and get the earliest appointment.  Call everyday as ask for any cancellations.  And.....stop searching Dr. Google for now.  Take care of one issue at a time.  You have a positive celiac panel and the next step is an endoscopy to obtain biopsies (four to six).  

I am not making this stuff up:

Open Original Shared Link

Open Original Shared Link

Get back to Dr. Google is celiac disease is ruled out (in my opinion and I don't have a MD degree, but you most likely have it).  Good Luck!  

[JonBNF]

I have my gi appt tomorrow. I'm just nervous the omeprazole triggered an allergic reaction in the form of an auto immune response. My monocytes were in the high normal range and I tested positive for having mono when I was younger but I was told I didn't have mono. My concern is they're misdiagnosing me. I never had mono as far as I remember and I've been tested before always came back negative. 

[JonBNF]

Does the anxiety subside? I feel like it's the end of the world right now or like it's not celiac and I'm gonna die because they'll never get the right diagnosis. I'm so weak that sometimes I feel like when I fall asleep I won't wake up. I didn't feel this weak until I took the omeprazole. Also I'm worried that I won't handle the anesthesia well cause of my weakened state. Thanks guys sorry for the rant. I'm freaking out. 

[squirmingitch]

You're freaking out. Anxiety is one of the symptoms of celiac disease. CALM DOWN!!!!!! Just breathe, breathe. You're not going to die tomorrow or tonight or the next day. Settle down. If you had a positive celiac panel then the next step is an endoscopy & then you can begin eating gluten free. 

Now seriously Jon, think about it for a minute. Anesthesia is administered to people in weakened states ALL the time!!!! People who have gunshot wounds who need surgery. You think they aren't in a weakened state from loss of blood? People seriously injured in car wrecks who require immediate surgery. You think they aren't in weakened states?

Just calm down!

Don't start going through all the what if's & I might have this instead, or I might have that instead or OMG I might have every autoimmune disease a body can have OMG!!!! Stop it!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Stop it NOW!!!! Just listen to yourself. In your first post you stated how you were having problems for 8-10-12 years & it was always being sluffed off as IBS. Now you have finally found out the reason but now you're freaking out that it might be a misdiagnosis. Really, you need to get a grip on yourself. I'm not being heartless. My husband has anxiety like you never dreamed of and this is exactly what I do to "talk him down". So I really do know how anxiety can affect a person and I do sympathize but you have to put forth some effort as well okay?

Do yourself a favor. Put on a nice comedy movie & immerse yourself in it or read a great book or play with your dog or cat or go outside & do some gardening. Whatever it is that you really love doing -- do it!

[JonBNF]

Thank you. I'm already eating gluten free. Thinking about going back to eating it terrifies me with how weak I am. My gp told me not to start eating it. I asked him if I should for the biopsies. Is it normal to have ear pain and dizziness? Every semi loud sign gives me a jolt and drives me crazy. Also when I start to fall a sleep I get a heart flutter that jolts me and wakes me up. 

[squirmingitch]

Jon, you MUST be eating gluten for at least 2 weeks prior to the endoscopy!!! This is VERY important otherwise you can get a false negative. GAAAAAAAAAAAAAAAA, I wish docs would stop telling people to go gluten free before all testing is finished!!!!!!!!!!!!!!!!!!!!!!!! Grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr!!!!!!!!!!!!!! They are just wrong!

Thing is, when you go gluten free & then go back on it for further testing most of the time we have far stronger reactions than if we just continued eating it in the first place.

Jon, there are some 300 symptoms associated with celiac disease, that doesn't mean each symptom means one has celiac disease but celiac disease can be the cause of any/all of those 300 symptoms. We're all individuals and as such our bodies have different reactions. I had ear pain that I no longer have. It was a sudden sharp pain that would literally make me jump. I got heart flutters, skips, arrhythmia's, fatigue like a vampire sucked all the blood out of me. My hubs (yes, ha,ha, he's celiac too - it happens) had alternating "D" & constipation - it was like a roller coaster with him. Not going for a week & then only like a cat once every few days & then 3 days of the big "D". Both of us had anxiety through the roof. I'm a really laid back person & I was so anxiety ridden it wasn't even funny. My hubs has additional reasons for his anxiety (Vietnam Vet with PTSD) but his anxiety has been much better since gluten free.

[JonBNF]

Visited the GI today seen the np there. She told me the blood tests are definitive and is sure I have celiac and told me not to start eating gluten. I'm so weak that I can't even get into the shower. I have been out of work for 2 weeks. I feel like I don't have time or strength to risk eating gluten. My egd is scheduled for December 5th. 

[ironictruth]

On 11/9/2016 at 5:40 PM, JonBNF said:

I'm having a lot of anxiety. My symptoms really took off after I took 2 omeprazoles. Now I'm doing research on auto immune liver disease and all my symptoms point to this. Is it possible my blood test doesn't mean celiac but it means liver disease? Help! 

I had, and still do, have the exact worry. That and the damn pancreas. 

I, like you, am an anxious mess which only makes it worse for us, and easier for docs to dismiss. Also, I am not overreacting when I say I had some s$#&ty docs. I did not do well on protonix either. Have an abdominal mri, NET scan in the next weak and a celiac specialist. 

Do not eat it if you think it is making you worse. Just know that there is a chance you could get a false negative biopsy. Then your anxiety level will increase because you will not have an answer

Get off the ppi unless someone proved to you why you need it. They hand that stuff out like candy. Talk with your doc about liver concerns. Check enzymes, ask for an ultrasound.  

Squirming itch is right. I also have heart skips and ear pain. 

So many trips to the ER...

Find whatever you can do to help you stay calm in the moment. This is easier said then done, I know. 

[JonBNF]

Can someone help me better understand my blood test results? 

[cyclinglady]

2 hours ago, JonBNF said:

Can someone help me better understand my blood test results? 

Let's start out with the fact that I am not a doctor.  But I can say that your celiac test results are comparable to mine.  Glad that your doctor did a fairly comprehensive panel. Had you just had the screening TTG, your diagnosis would have been missed.  That's why I push for the complete panel if it's at all possible.  

You are not IgA deficient, so that means any IgA tests are going to be valid (in this case they use this test as a control test).  Your TTG test was negative, but your DGP IgA test was positive.  Normally, the next step would be for your GI to order an endoscopy and obtain four to six biopsies to confirm a celiac diagnosis as recommended by leading published celiac researchers and groups like  the American and British GI Associations.  Sounds like your doctor is not skipping this step, but he has advised you to go gluten free now.  Your gut can heal in less than two weeks (unlikely, but possible), so most recommend staying on gluten.  The exception being that you have to wait months to a year for the endoscopy.  Suffering for that long is out of the question, so patients are advised to go gluten free.  However, they will need to do a gluten challenge for two to four weeks (if the patients can even stand it).  Once off gluten, it is well....HELL...to do a challenge.   I don't agree with your doctor telling you to go gluten free, but I don't have the entire story either.  My advice is to keep records and get that diagnosis in writing.  Someday, you might have another GI who will NOT believe you should your biopsies be negative.  It happens.  

Not an expert EbV (Epstein Barr Virus), but either you had it long ago or you have it right now (which could really account for your feeling so sick right now or it could be celiac disease....)    Antibodies for it can last a lifetime (hubby had it in his teens) and those usually show on lab tests decades later.    Folate is high, but not to worry.  So is mine.  You might not be processing any artificial folic acid.  I do not use supplements for this reason.  I stick to natural foods and I am no longer deficient in anything (except for some brain storage capacity -- "What's your name again?" ).  

Your BMI is good too.  

[ironictruth]

On 11/9/2016 at 7:16 PM, JonBNF said:

Thank you. I'm already eating gluten free. Thinking about going back to eating it terrifies me with how weak I am. My gp told me not to start eating it. I asked him if I should for the biopsies. Is it normal to have ear pain and dizziness? Every semi loud sign gives me a jolt and drives me crazy. Also when I start to fall a sleep I get a heart flutter that jolts me and wakes me up. 

My ear pain was from my thyroid. Does your neck hurt? 

[JonBNF]

Is it normal for my pain to get worse. I've been gluten-free for the last 5 days. The fatigue seems better but the mornings are terrible loads of anxiety and fatigue. But my abdominal pain seems worse pretty much anything I eat is hurting. 

[cyclinglady]

17 hours ago, JonBNF said:

Is it normal for my pain to get worse. I've been gluten-free for the last 5 days. The fatigue seems better but the mornings are terrible loads of anxiety and fatigue. But my abdominal pain seems worse pretty much anything I eat is hurting. 

Withdrawal symptoms have been reported.  This tends to dissipate in a week or so.  Your gut is damaged.  Best to stick to well-cooked meat, fish, veggies, bone stock, soups, and even fruit until you feel better.  Consider gluten-free digestive enzymes.  The anxiety can take a while to resolve.  Try to be patient (hard I know).  

[JonBNF]

Thanks cyclinglady I've been eating Whole Foods. This morning I was super sick feeling thought I was gonna puke I've never puked. I had to rush to a store to find a bathroom and my breakfast from the morning came out 2 hours later and after I felt as if I was gonna pass out. I just thought after a week of starting the diet I would notice a little improvement. My ear pain seems to have subsided ironictruth. I have more of a pressure in my sinus area that's causing a vertigo type dizziness.  Today a weird thing happened when I was falling asleep trying to take a nap I was jolted and my leg muscles were twitching and I felt internal tremors throughout my body. Don't know if this is anxiety or seizures. Kind freaking out if it's seizures. I was gonna call the dr in the morning to tell him I'm not feeling better. Most likely I'll be told to give it more time. But the thing is I have to get back to work and I have no energy. I'm a mailman and I walk a ton. 

[cyclinglady]

Anemia was  really my one main symptom.  I had seven weeks between my blood test and biopsy and I ate gluten like there was no tomorrow.  I kid you not, that I consumed a loaf of bread a day.  Seven weeks and I was done with gluten.  I developed gut issues.  I did not see any improvement for six weeks in the gluten-free diet.  Then it took about a year to really feel good.  

Luckily, you are in shape and should heal much faster than the average person.  Exercise has it's perks.  

Hang in there!   

[cyclinglady]

Jon, 

i think you need to find out from your doctor if your Epstein Barr virus is active.  

[JonBNF]

7 hours ago, cyclinglady said:

Jon, 

i think you need to find out from your doctor if your Epstein Barr virus is active.  

 

7 hours ago, cyclinglady said:

Jon, 

i think you need to find out from your doctor if your Epstein Barr virus is active.  

He told me it's showing I had it in the past. Which I don't recall ever having it. 

[cyclinglady]

48 minutes ago, JonBNF said:

 

He told me it's showing I had it in the past. Which I don't recall ever having it. 

Okay, so the extreme fatigue and other symptoms are probably all related to celiac disease.  Neurological symptoms are common in many of us.  Those take longer to resolve in general.  But things do get better!  I promise! 

[ws19817]

Hi there,

I'm so sorry you're having so much trouble. I'm not nearly as knowledgeable as others on this site and those that have already commented, but I have a couple pieces of advice:

1) I had the exact same mono test results and my doctor showed me the interpretation guide (basically the guide for matching up the four tests +/- and what each combination means). Your combination is the same as mine (+ on the same two, - on the same two) and she said that indicates you had mono at some point in your life, but that it is now NOT active. A different combination would indicate re-flaring/chronic mono - yours does not. (At least according to my doctor, who is a naturopathic MD.) So I wouldn't worry about that any longer. Mono affects everyone differently and with all your other symptoms going on you may just never know exactly when you had it, but you don't have it now.

2) I've been off gluten for 2-3 months post-diagnosis and I'm still not feeling 100% better but it is improving. The first few weeks I felt nauseous/sick all the time, particularly in the morning, and I found that wearing Sea Bands helped. They're acupressure bands that you wear on your wrists to help nausea and they're about $10 at Walgreen's or any other drug store. Maybe it was the placebo effect, but I think those got me through the mornings at work really well, and I always think it's worth it to try something that is cheap and that has zero risk of upsetting your stomach/body more (even TUMS/Pepto/etc. weren't easy on me at the beginning).

Hang in there!

[GFinDC]

Hi Jon,

It may take a while for symptoms to get better.  I think it's helpful to avoid most carbs and sugar the beginning because they can cause bacteria to have a little happy gut gas party and cause pain.  Eating plain foods without much spice is probably good too.   Your gut is trying to heal itself and we need to help it out by not loading it down with hard to digest foods.  So cooked foods are better and simple foods also.  Betaine HCL may help your digestion after a meal.  Have you given up dairy?  Dairy can cause problems for people at first.

I hope you feel better soon.  We need our mail!