Tested Positive But Not Diagnosed.

[(Ashley)]

I just signed up here today.  I have very bad anxiety and my thoughts have been running rampant for the past few days.  I need someone to talk to that can understand what I'm going through.

 

To sum it all up; I've been having bad tummy issues since last May.  I had a blood test done for Celiac and an EGD (biopsies were taken) in November.  Return appointment with my gastroenterologist was this past Monday.  I found out that my blood test was positive.  However my biopsies were negetive.  He said he was going to send me somewhere else for a second opinion.  My next appointment with him however isn't until the end of February.  So, I don't know if I'm Celiac or not.  But I do know things have gotten a lot worse since my EGD and the thought of several more months before I have any answers is driving me nuts (two months before I see him again and who knows how long before I see the other doctor).

 

I do not know what kind of blood test I had.  On the paper I took to have my blood drawn just said, Celiac Panel.  I also do not know how many biopsies were taken.

 

How likely is it to have a false positive on the blood test?  I've read that you could get a false positive if you have another autoimmune disorder.  However I have never been checked out for anything else.  My thyroid is often checked as my mother and sister have thyroid problems.  Mine have always come back normal (recently checked this past fall).

 

 

Now for the long winded part.

 

I am a 28 year old female.  I do not drive and live with my parents.  I have extreme anxiety and panic attacks.  Especially social anxiety/phobia.

 

At the end of this past May I had a bad case of the flu.  I'm not 100% sure it was the flu.  I didn't go see a doctor.  I had a sore throat, stuffy nose, horrible chills and a fever of 103-105 for five days.  Afterwards I had a cough for about a week.  Thought everything was over.  But I ended up with diarrhea.  At this point my stomach didn't really hurt except for when I was in the bathroom.  I noticed I was passing undigested food.  Literally could tell what I had just eaten.  This lasted for 3 months before I finally got to see a doctor. 

By this point I started feeling a sharp stabbing pain above my belly button and in my upper right quadrant twards the front (close to esophagus).  Then a few weeks later more spots of pain developed.  On in the same place on the left side and a spot in the middle of my left side (like when you get a stitch in your side from running).  I then started having acid reflux without heartburn.  Acid will come up in my mouth if I bend over or lay on my stomach.

 

I have never had a primary care physician.  All my life I've been going to a local clinic and seeing whichever doctor was availible.  So, this was the first time I ever had a primary.  On my first visit I had blood drawn and gave a stool sample.  All came back normal except for slight anemia and high cholestrol.  I was put on Lipitor and nexium and sent on my merry little way.

Upon my next appointment, I was more persistant with my stomach issues.  I was told I have IBS and given Linzess.  Which on the paper that comes with the drug clearly states is for constipation.  I never took the stuff.  I was also sent for a Small Bowel Series.  Which came back abnormal and I was referred to a gastroenterologist.

 

The small bowel report said there was cobbling.  I can't rember where though.  Probable prognosis was Crohn's.

I then had a colonoscopy.  That report said that the terminal ileum looked abnormal with some erosian, erythema, and edema.  However the biopsies from it came back negitive for Crohn's.

 

Next was suggested Celiac and a blood test was done as well as an EGD with biopsies.  Which I already stated the results of above.

 

 

I have had digestive issues for most of my life.  Upset tummy, bloating, bouts of diarrhea followed by constipation.  Thought it was IBS but doctors were never concerned.

Other issues include:

-Anxiety since early childhood.  I also have a weird like "panic attack" without the symptoms of a panic attack (only common symptom is fear).  I kind of think they may be sensory seizures based on my own research.  I have never discussed it with a doctor though.

-Aches and pains since early childhood (brushed off as growing pains), which have gotten worse over the years.  Very sensitive to cold.  I think I might have developed arthritis.

-Muscle spasms that started at the age of 8.  Increased to nearly every day at the age of 12.  Then started to lessen by 16.  I don't have them near as much now though.

-Despite good dental hygiene and regular visits to the dentist, I had nearly every single tooth in my head filled at age 11 due to cavities.  I have also always had very sensitive teeth.  I also have white bands on my teeth.  Seemed more visible as a child.  My teeth are pretty white, so takes a close look to even notice them.

-I started gaining weight at age 8 and have been overweight ever since.  Though when I had my gallbladder taken out at the age of 22 (no stones, just sludge); I gained a lot more.

-On nearly every blood test I have ever had, I'm aways "slightly anemic".  I was put on iron supplements when I was 14.  But stopped when I ran out and there was never any followup.

-Migraines that started at the age of 8.  Fequency has increased over the years.  Though this past year I've been having them several times a week.  Recently every day.  I notice they are happening after I eat dinner (I don't eat much during the day).

 

I do not know what is wrong with me and there is a chance it isn't even Celiac.  But I think all these things are connected.

 

 

I know this is a long post and to anyone who reads it, thank you!  You don't have to reply.  I just needed to get it off my chest.

[ravenwoodglass]

Can you get copies of your test results? When blood tests are positive it is pretty certain you have celiac. Most of the celiac blood tests are specific to celiac but there is one that when only slightly elevated can be caused by other stuff. That is pretty rare though from what I have seen. 

You could try calling the GI and asking to speak to a nurse. Tell her your symptoms have become more severe and ask if she will ask the doctor if he will diagnose based on the positive blood tests and your improvement (if there is any) on the diet. You could also ask the same question of your GP as they can give you a formal diagnosis also. You positive blood work becoming negative after a time gluten free is also diagnostic when you combine it with symptom resolution. That is if you feel a formal diagnosis is absolutely needed. We don't after all need a doctor's permission to be gluten free. 

[nvsmom]

Like Ravenwoodglass said, a positive celiac disease tests almost always indicates celiac disease. Some doctors want all tests to be positive (and the stars and planets to align) before they will diagnose celiac disease, which is a problem because the tests do have quite a few false negatives (up to 25% in the newer tests, and up to 20% in the biopsy). Not many celiacs are positive in all tests.

 

Take a look at this report, page 12, and you'll see that the specificity of the celiac disease tests for celiac disease are quite high - specificity refers to the percentage of positive tests that is caused by celiac disease. The sensitivity of the tests is not as high though - this shows the percentage of celiacs that these tests will catch with a positive result.  Open Original Shared Link

 

The full celiac disease panel includes:

• tTG IgA and tTG IgG - most common tests.  A weak false negative can be caused by colitis, crohn's, diabetes (type 1), thyroiditis, chronic liver disease, or a serious infection.
• DGP IgA and DGP IgG - newer tests
• EMA IgA - similar to the tTG IgA and almost always indicates celiac disease
• total serum IgA - a control test
• AGA IgA and AGA IgG - older and less reliable tests largely replaced by the DGP tests

Some tests are more reliable than others so it is a good idea to find out what tests were done and get copies of your results. 

 

Dr Fasano has said to get a celiac disease diagnosis, the patient should meet 4 of 5 criteria:

1. celiac disease symptoms
2. positive celiac disease tests
3. positive genetic tests
4. positive biopsy
5. positive response to the gluten-free diet

Open Original Shared Link

 

If all of your testing options are done, your only options are to ignore the blood work and keep eating gluten and retesting every year or two (possibly until you are sick enough to get a diagnosis) ,or go gluten-free for 6 months and see if you improved (keep a food and symptom journal to help you keep track of slow improvements) and retest to see if the tests are going down.  I would vote option 2.  It is tough to go gluten-free at first but the rewards are there if you stick with it.

 

Welcome to the board.  

[(Ashley)]

I will call on Monday.  The doctor's office is closed Friday-Sunday.  However they rarely answer the phone.  I had my EGD in November 24th and was told to call for results the next week.  I called and called nearly everyday.  I eventually gave up and waited until my next appointment (which was December 29th) to get my results.

I have a feeling I'm going to have to wait until February 25th to get copies and questions answered.  That is if I cannot find someone willing to drive me to the office.  I live an hour's drive away.

 

I should have asked those things the last time I was there.  I always intend to.  But because of my anxiety and poor communication skills, I get talked over and rushed.  I swear I only spend about 10 minutes with the doctor.  I sit forever waiting.  Then they just pop in and pop back out of the room before I can open my mouth.  It's frustrating.

I hope my mother will come with me next time.  I tend to do better at concentrating and speaking if I have someone with me (feel less panicked).

 

I know I could just go gluten free.  But around here you have to have a diagnoses or doctors will disregard your problems and could do more harm than good.

For example: I've read that some pills can contain gluten.  If I do not have a diagnoses saying that I cannot have gluten, I might be given those pills with no effort to find an alternative.

Also my doctor will continue trying to give me essentially, strong laxitives to treat me for IBS-C even though I have diarrhea.

So, I believe it is in my best interest to try and get a diagnoses.

[nvsmom]

I understand about doctor anxiety, I'm the same way. I have to take notes for myself to read from, and if a have a bunch of issues, I make my doctor a copy to read too. I hope your mom can join you there, support is always helpful. 

 

If the doctors won't diagnose you with celiac disease, and gluten is an issue, see if they will consider a diagnosis of non-celiac gluten sensitivity (when all testing is done).  If you do better on the gluten-free diet, that should indicate NCGS.

 

Good luck! 

[icelandgirl]

Wow...that's really tough. (((Hugs))) to you. I'm sorry for your struggle.

I would absolutely request copies of the bloodwork...it's your right to have the results. I was diagnosed through blood only. I second what the others have said...go gluten free...don't continue to be miserable. You may find that your anxiety will be reduced a great deal after being gluten free for a time.

I have huge Dr anxiety...I have to do slow, deep breathing while in the waiting room. I've brought someone with me to appointments that I'm particularly anxious about and that helps. Writing down what you want to convey helps too. I'm rather soft spoken and it's quite easy for people to talk over me. Finding a good GP really helps...you develop a relationship with him/her and that makes it easier when you go in to talk about what's going on.

I hope you've found some relief by expressing your frustrations on here. Keep asking questions and advocate for yourself.

[bartfull]

How about writing to the doctor requesting the test results and sending a stamped, self-addressed envelope for them to put your results in? Then you can show us your results and if they look positive we can direct you to info from experts that you can print out for your doctor when you go in February. SO MANY doctors don't know much about celiac and what they do know is old, out of date info.

[(Ashley)]

I will take one thing at a time. First thing is to call on Monday.

I think I have to sign a release form to get copies of any records. I do everywhere else. So, they probably won't mail them. But it won't hurt to ask.

I forgot that I have a Dintist appointment on Tuesday. It's in the same town. So, I should be able to stop by and pick a copy up.

[bartfull]

Make sure you call first so they can have them ready.

[icelandgirl]

Totally agree with bart...call ahead, let them know you want copies of all your recent lab work and when you'll be there to pick it up. Once you get it, post the results on here. There are so many great and knowledgeable people on this site that can help.

[(Ashley)]

I picked up a copy of my blood test and I can't really understand it.  But I think only the tTG IgG is positive?

[BlessedMommy]

Looks like according to your test results that tTg testing is over 99% specific to celiac. 

[nvsmom]

Yes, your tTG IgG is a strong positive so you most likely have celiac disease.  

 

Also to note, your Immunoglobulin A, Qn,  Serum (or total serum IgA) is low.  This test is run as a control test for celiac disease because if you have low IgA, which 5% of celiacs do, the all of your IgA based celiac disease tests will result in a false negative even if you have celiac disease.  You don't make enough IgA to detect IgA based autoantibodies - all IgA based tests (tTG IgA, DGP IgA. EMA IgA) are invalid for you.

 

The only celiac disease blood test option left to you is the EMA IgG (not offered everywhere). Like the tTG IgG, it too is highly specific to celiac disease

 

Even though your biopsy was negative, which happens up to 20% of the time with celiacs, you still have celiac disease.  The intestinal damage was probably spotty an they just missed it. Considering our intestines have the surface area of a tennis court, I am amazed that there are not more false negative biopsies.

 

Best wishes.

[(Ashley)]

Thank you for the help.  I'm not going to stop gluten just yet.  My GI wants to send me for a second opinion and they might want to do their own tests.  But I'm not waiting around forever.  If I don't get a diagnoses I'm just going gluten free anyway.

I was wondering if the cobblestoning in the duodenum (I'm pretty sure it was the duodenum) that was reported on my small bowel seiries has anything to do with Celiac?  That is what initially got me referred to a gastroenterologist.

[nvsmom]

Scalloping in the intestines is a pretty common thing in celiacs, especially in early cases.  It would be described as Marsh 1-2 on the Marsh scale of damage.  I think they won't diagnosis celiac disease based on a biopsy until it gets to stage 3.  I don't know much about biopsies though, I skipped it, so I don't think I can help you much with that.  Try looking up the Marsh scale and see how it would apply to your results.  You could also post your biopsy results in a separate thread and some more experienced people will be able to give you their thoughts.

 

And I agree that it is probably wise to wait to go gluten-free until you have your appointment, and then give it a try regardless.  I hope you don't feel too poorly until then.

[MitziG]

You have celiac. Your low IGA is causing false negatives most likely. Dgp test I specific only celiac. However, having a diagnosis is helpful because without having it, doctors wont take you seriously when you say you need to be gluten-free. If you are hospitalized, you may not get to order from a gluten-free menu without a diagnosis. Many times it will be important, so try to get it. Your biopsy is indicative of celiac as well. Either they missed the worst area or you don't yet have significant damage, but the scalloping of th e duodenum combined with the positive dgp is a slam dunk.

[(Ashley)]

Back with an update.

 

 

I had my return appointment with my GI doctor.  He is sending me to a specialist in either Pittsburgh P.A. or Charlottesville V.A. (I live in W.V.).  But either way I have to wait until April or March to go.

My doctor said he is pretty sure that I have Celiac disease.  However he wanted to make sure and he isn't very experience with it.  That's why he wants me to see specialist.