Endoscopy Biopsy Results Were "could Reflect Mild Celiac Sprue"?

[mandykeily]

I am beyond frustrated.  Ok, so here's a little background:

 

My mother was diagnosed (via biopsy) with celiac in 2000.

 

Last month, I had a miscarriage at 20 weeks.  I have two kids (6 and 2) and have never had a history of miscarriages or pregnancy issues.  In fact, they couldn't find anything wrong with my baby, except that it was small.

 

I have anemia, diarrhea, constipation, gas and stomach pain, vomiting on occassion, headaches, anxiety and irritability.

 

I had the blood work and endoscopy with biopsy.... blood work was negative and the biopsy report says "mildly increased epithelial lymphocytes"..."the changes may have no clinical consequence, but could reflect mild celiac sprue".  I did however get diagnosed with eosinophilic esophagitis (EE), which is common to have if you have celiac ((sigh)).

 

My GI doctor said my symptoms don't reflect those of celiac... Um are you kidding me???  First off, my mother vomits when she eats gluten and SHE HAS CELIAC!  I get that it may not be super common, but combined with everything else I think that statement is ridiculous!

 

Here's the thing.  We want to try to get pregnant again, and I am terrified about getting pregnant and then losing the baby and finding out 6 months or a year from now that, yep I have celiac, and had I been on the gluten-free diet, my baby would have survived.  I have an appointment with another GI doctor to get a second opinion... what do ya'll think??  How can my biopsy report say that I MAY have celiac???  I thought you either have it or you don't.

[beth01]

I would get a new doctor. Ask for your pathology slides to get a second opinion. If this isn't a viable option, go gluten free and live as a celiac. There is no " mild celiac sprue", you have it or you don't. The line on the pregnancy test might be light pink or dark pink, but it's still a line.

That being said, I had multiple lost pregnancies. This was 13 years before my diagnosis but I still have all the same symptoms, just not nearly as bad as I have the last year leading up to my diagnosis. Can I say it was from undiagnosed Celiac? No, I can't without a doubt say that. Do I suspect that was the issue? Hell yes I do.

I am so sorry you have had to go through this. I know how hard it is getting the nerve to get pregnant again, I know the anxiety of finding out you're pregnant again and being a wreck with worry. I did go on to have two children but I also had awful pregnancies, both my kids were early. My daughter ( she is celiac also, confirmed by blood tests a month after my diagnosis, I will tell you that story in a bit) was 4 weeks early and my son was almost 8. She was 5 lbs 12 oz and he was 3 lbs 6 oz. Both times my placenta was nearly dead when I delivered and had decreased amniotic fluid with both. I nearly lost both of them and would have lost my son had they not watched me so close because of the issues I had with my daughter. I'm not trying to scare you, just give an experience.

My doctor who was seeing my whole family at the time, didn't want to test my kids when I asked for them to be tested. He told me " don't worry, they won't be positive". Now mind you, my daughter had just spent the last year fainting oddly at school. They sent her for an EKG, ECHO, she wore a halter monitor for a month, but he wouldn't test her blood for a KNOWN GENETIC disease? Well, you know how that turned out. I also don't see that doctor any more and neither do my children.

If you could post copies of your lab results, we could help you with those. Some doctors don't do all the needed blood tests. Also, have you had your thyroid, and vitamin levels tested?

I am sure someone else will chime in and give you some more advice. Once again, I'm so sorry you are going through all this.

[1desperateladysaved]

I think you did the right thing by asking for a second opinion and I hope that the next doctor will listen.  Best wishes

 

Dee

[CajunChic]

I was diagnosed the same way. Seronegative with a marsh 1. I had my genes tested and found I have double DQ2 genes. Went gluten free and saw changes, then felt bad again. Found other intolerances. There are days I doubt this dx and wonder since I'm not "officially " diagnosed. But, my body speaks for me. My dr and I are confident its celiac.

Good luck and stay diligent in your health. I had to be my own advocate!

[cyclinglady]

Get copies of your tests. Maybe they did not do a complete celiac panel. I only tested positive (3/2013) in one of the least popular celiac disease tests to give.

My hubby went gluten free per the bad advice of his GP and my allergist (no testing). It was a miracle (one of his symptoms was snoring)! He did that 13 years ago. No doctor suspected celiac disease even though thyroid, MS and other autoimmune disorders run in his family. He refuses to do a gluten challenge now. Can you blame him? He knows gluten makes him sick.

Your anemia? Did they figure that out or just blame in on your being a WOMAN with heavy period? Do not accept that!

Find another doctor!

Good luck and take care!

[mandykeily]

Thank you all for your responses.  I truly appreciate it.

 

Yeah, the GI doctor goes "it looks like you're severly anemic" before doing my endoscopy.  At my appointment to discuss the results of my biopsy a couple days later, he said everything came back normal, except that I have EE (which he wrote me a 30 day steroid subscription for).  Then I get in the car and look at the report he gave me a copy of, and it says the mild celiac thing.  I definitely need to get a copy of my blood work lab results, because of course he didn't give me any numbers, just kept saying "you don't have it."  

 

I also had a genetic test done back in 2000 when my mom first got diagnosed and found out I do have the celiac gene.

 

It sucks because the soonest I can get in to get a 2nd opinion is January 6th.

 

[hrenee101]

Sorry for your loss. I'm sorry you can't get a second opinion until January 6. I would call the office and ask to be put on a cancellation list or keep calling and see if anyone has cancelled their appointments and maybe you can get in early. This is what i do when i get told that i can't be seen in a "reasonable" time frame. I was just recently diagnosed and my doctor referred me to a nutritionist and they scheduled my initial appointment for March. They are supposed to help me learn how to eat right but i have to wait 4 months that's just ridiculous to me. Good luck, I hope you get the answers soon. 

[mandykeily]

Sorry for your loss. I'm sorry you can't get a second opinion until January 6. I would call the office and ask to be put on a cancellation list or keep calling and see if anyone has cancelled their appointments and maybe you can get in early. This is what i do when i get told that i can't be seen in a "reasonable" time frame. I was just recently diagnosed and my doctor referred me to a nutritionist and they scheduled my initial appointment for March. They are supposed to help me learn how to eat right but i have to wait 4 months that's just ridiculous to me. Good luck, I hope you get the answers soon. 

Thanks!!  That's a great idea!  I am going to do that this morning.  I was able to pull up all the lab work the first GI ordered... turns out, he never did a celiac panel!!!!!!!!!!!!!  I just assumed it came back negative since he said all my blood work came back normal (shame on me for not being more diligent).  From looking over the blood work, I have found that along with being anemic, I am vitamin D deficient, ANA positive (which I guess can indiciate the presence of an autoimmune disease), and have high cholesterol (LDL)... can't believe he never told me all this!  Anyway, I am definitely going to try to get seen sooner!  

[mandykeily]

Well, I was able to get in with the GI doctor I am going to for the 2nd opinon today (someone cancelled so I got their spot).  I'll be going in for another endoscopy as well as a colonoscopy tomorrow morning.  Fingers crossed I get some answers finally.  I will post an update when I get my biopsy results back.

[squirmingitch]

Gosh I hope you read this before you go to the appointment!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

 

If you're on the steroids they 1st GI prescribed for you then it will skew the tests!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! You have to be off those for a while before tests!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

 

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[mandykeily]

Gosh I hope you read this before you go to the appointment!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

 

If you're on the steroids they 1st GI prescribed for you then it will skew the tests!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! You have to be off those for a while before tests!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

 

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Oh man, thank goodness I didn't fill the prescription!!  Thanks for looking out!

[squirmingitch]

YVW!

And......

Have you been eating gluten-free? You need to be eating a full gluten diet for bloods & endoscopy or else you can get false negatives.

2 slices of gluten bread per day for 6 - 8 weeks.

[GFinDC]

Hi Mandy,

 

You might want to read Dr. Peter Green's book:

 

https://www.celiac.com/forums/topic/12782-new-book-celiac-disease-a-hidden-epidemic/

 

I think he recommends women wait 6 months after going gluten-free before another pregnancy.  Probably so the body has a chance to recover/heal some and restore vitamin levels to normal.  People on this forum sometimes report ongoing symptoms after going gluten-free that last up to a year or more.  Not everybody takes that long to recover but it does happen.  That time might be shortened by being extra careful of your diet choices.  Eating mostly whole foods and avoiding processed foods for example.

 

Like Squirmy said, if you aren't eating gluten before tests they are not reliable.  That means eating gluten for a period of time, not just a day before the test.

[mommida]

I am sorry for your loss.

 

I'm glad you are going for a second opinion.  It seems to me you may not have been made aware of the proper steps for an Eosinophilic Esophagitis diagnoses.  The steroid atomizer is one part of the process.  You should have been referred to an allergist (not always helpful, but if you can identify any "allergens" through testing it would be worth it)  WHEN ALL TESTING IS COMPLETE you start an elimination diet, to try and identify your "triggers"  that is usually the top 8 allergens, gluten, and peas.  If you are "triggered" by gluten ~ you are to avoid gluten just as seriously as any diagnosed Celiac.  You are at risk of getting food stuck in your esophagus from the long term damage of eosinophils.  If food gets stuck in your throat you may need emergency dilation surgery.  If you don not stop long term damage from happening, you may need to be on a feeding tube.

 

We have members here that avoid gluten because of EE diagnoses.

[BlessedMommy]

Wow, so he never actually even ran the bloodwork!!

 

I would say, get that bloodwork drawn as soon as you can. Good luck!

[MitziG]

Oh SMH the idiocy of doctors never ceases to amaze me. With a first degree relative with celiac, your chances are 1 in 12. Throw in your symptoms, a questionable biopsy and a positive ANA and you might as well be waving a red flag at them. Sigh. Hope by now you have gotten some answers. I am so very sorry about losing your baby. How awful. Stories like yours are all the more heartbreaking when you know it maybe didn't have to be that way if more doctors were on the lookout for celiac. In my opinion, EVERYBODY should be screened. So very angry for you!