Positive Endoscopy for Celiac but Negative Bloodwork. Help please!

[jrdotzler]

Hi I am new here... I don't know if I am celiac or not or what is causing my issues. Here is my history:

-Diagnosed Hypothyriod -  Dec 2012

-Diagnosed Hashimotos - Apr 2017 

-100% gluten free since May 2017

Now since last month I was having some mild stomach cramping (just like a dull stomach ache), extremely bloated & gassy, nauseous, some diarrhea and rectal bleeding twice in Jan 2018. The GI doctor wanted to do a colonoscopy & endoscopy. They found internal hemorrhoids which explains rectal bleeding. Now the biopsy they took came back with... "mild villous blunting, mildly increased lamina propria chronic inflammation, and significantly increased surface lymphocytes. The histologic findings in the duodenum suggest celiac disease."

They ran a celiac serology but it came back negative... I mentioned I was gluten free for 9 months and they said that the bloodwork is useless then.

So if insurance covers it, they want to run a celiac gene test HLA DQ2 & DQ8.

Now my questions are... does the endoscopy prove I am celiac? The nurse mentioned maybe all the biopsy results could be from something else?? Like what? And lastly, if I have been gluten free for 9 months, why am I having more stomach issues now?

Also, I wanted to mention I just had my 3rd baby in Sept 2017.... didn't know if pregnancy has any impact or not. I am new to this all. Thanks for any help!

[cyclinglady]

1 hour ago, jrdotzler said:

Hi I am new here... I don't know if I am celiac or not or what is causing my issues. Here is my history:

-Diagnosed Hypothyriod -  Dec 2012

-Diagnosed Hashimotos - Apr 2017 

-100% gluten free since May 2017

Now since last month I was having some mild stomach cramping (just like a dull stomach ache), extremely bloated & gassy, nauseous, some diarrhea and rectal bleeding twice in Jan 2018. The GI doctor wanted to do a colonoscopy & endoscopy. They found internal hemorrhoids which explains rectal bleeding. Now the biopsy they took came back with... "mild villous blunting, mildly increased lamina propria chronic inflammation, and significantly increased surface lymphocytes. The histologic findings in the duodenum suggest celiac disease."

They ran a celiac serology but it came back negative... I mentioned I was gluten free for 9 months and they said that the bloodwork is useless then.

So if insurance covers it, they want to run a celiac gene test HLA DQ2 & DQ8.

Now my questions are... does the endoscopy prove I am celiac? The nurse mentioned maybe all the biopsy results could be from something else?? Like what? And lastly, if I have been gluten free for 9 months, why am I having more stomach issues now?

Also, I wanted to mention I just had my 3rd baby in Sept 2017.... didn't know if pregnancy has any impact or not. I am new to this all. Thanks for any help!

If you were gluten free for Hashimoto’s reasons, you might not have been as gluten free as you think.  Investigate every possibility: thyroid med, eating out, hidden gluten in processed foods, lipstick, kissing a gluten eater (or a slobbery adorable baby or child) sharing a toaster or colander, wooden spoons, etc.  

Some celiacs are seronegative.  Your villi dmamge could be to due to other issues, but as a fellow Hashimoto’s gal, my bet would be celiac disease.  You can have more than one autoimmune disorder.  

Open Original Shared Link

My guess would be that gluten is getting into your diet.  Get your kids tested!  

 

[Posterboy]

4 hours ago, jrdotzler said:

Also, I wanted to mention I just had my 3rd baby in Sept 2017.... didn't know if pregnancy has any impact or not. I am new to this all. Thanks for any help!

jrdotzler,

see this thread

be sure to read the verywell article on this topic but I will link it below for easy reference.

quoting

First Comes Baby, Then Comes Symptoms

"Most women are diagnosed with celiac disease after at least one pregnancy — in fact, a comprehensive Italian study published in 2010 on the reproductive effects of celiac found that 85.7% of women received their celiac diagnosis following their first pregnancy."

and stress is common before a celiac diagnosis.

https://www.celiac.com/articles/23506/1/Stress-Common-Before-Celiac-Diagnosis/Page1.html

the very well site summarizes this question  very well.

Answer:

"Some scientists believe Open Original Shared Link requires a "trigger" — a health or life event that causes your body to suddenly reject Open Original Shared Link, even though you've likely been consuming gluten-containing foods for your entire life with few or no problems"

so there could be a connection but is not proven.

quoting again (but read the whole thread and/or very well article for yourself.

"Speculation on possible celiac disease triggers has ranged from severe gastrointestinal conditions — a bad bout of food poisoning, for example — to emotional issues such as divorce or job loss. But one of the most common possible "triggers" mentioned involves pregnancy: Many women have reported that they developed severe Open Original Shared Link shortly after being pregnant and giving birth. . . .So could there be a connection?"

so a third pregnancy certainly could have been a trigger.  whether it was or not is harder to prove until more research is done to prove this casual association.

Here is the verywell link on the italian research about the connection between pregnancy and a subsequent celiac diagnosis.

Open Original Shared Link

The fact that the research is italian is very significant.  If I remember correctly 1 in 10 Italians have celiac disease so they have studied these issues extensively.  And have good research on the topic.

I hope this is helpful.

2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things” this included.

posterboy by the grace of God,

 

 

[mommida]

You were on a gluten free diet for the blood draw - so it is useless.  If you are doing a good thorough job eating gluten free it should be negative.  Your positive gut damage is proof of Celiac.  It has been said Celiacs need about 2 years to heal the gut.

 

I did hear of a case of medication (for a mental disease) caused Celiac like gut damage in a child.  The parents were not really open about discussing the behavior/mental condition of their child or the medication.

I think you have enough proof to justify needing to be gluten free.  You can spend more money for genetic testing that may not as accurate as what you have been told as any blood test has a 30% human error rate.

 

[cyclinglady]

Your doctor is following normal diagnostic protocol in ordering the gene test.  It will help him in finalizing your diagnosis, but improvement on a gluten free diet will also do the same thing.  In fact, following up with another endoscopy (allowing for enough time to heal) will solidify your diagnosis without a doubt.  I personally would take a follow-up endoscopy over a gene test, if your insurance will not cover the gene test.    It will provide a lot more information.  

[TrinaP]

You may want to try taking miralax daily. I was Gluten-Free for two years after my diagnosis and suddenly got all kinds of bloating and undigested food in my stools. I did a bunch of work up and they only found my vitamin B12 was low. I have been taking miralax daily now and all my symptoms have gone away. I have also just started eliminating carbs and because I feel so much better when I don't eat them. Hope this helps! I'm no expert but I think we will see in years to come that celiac is more related to GMOs then it being autoimmune. I'm interested to see what will come..I have not one single family history of celiac and was 28 when I was diagnosed.