Scope and biopsy - lymphoma

[Booiegirl 0]

I just had my 3rd upper endoscopy after being diagnosed with celiac disease 6 years ago.  The reason for the scan is persistant raised ttg levels (70+) despite being strictly gluten free (our household is gluten free as well).  So my GI doctor is concerned about the possibility of refractory celiac, hence the scope.  My main symptoms would be fatigue and brain fog (but that could just be my life!), although I do have persistently low RBC counts, high MCV and high MCH results (but B12 and folate are in normal range, last blood work did not test ferriten).  My question is related to a comment that the doctor made to the nurses when they were prepping me for the scope - he said we will be doing lots of biopsies and will need 2 containers - 1 with red cap for lymphoma.  I was too stunned to ask why he was doing biopsy for lymphoma - never been mentioned before to me.  And when I was in the recovery room I am pretty sure that I heard the nurse saying my name and urgent (but i was in recovery so drugged so maybe not, hoping not!).  Anyway, has anybody else had lymphoma biopsies as part of a celiac scope?  Is this normal?  Trying to not think about it until I get results, but it is playing on my mind more than I like.  Thanks!

[cyclinglady 1,157]

1 hour ago, Booiegirl said:

I just had my 3rd upper endoscopy after being diagnosed with celiac disease 6 years ago.  The reason for the scan is persistant raised ttg levels (70+) despite being strictly gluten free (our household is gluten free as well).  So my GI doctor is concerned about the possibility of refractory celiac, hence the scope.  My main symptoms would be fatigue and brain fog (but that could just be my life!), although I do have persistently low RBC counts, high MCV and high MCH results (but B12 and folate are in normal range, last blood work did not test ferriten).  My question is related to a comment that the doctor made to the nurses when they were prepping me for the scope - he said we will be doing lots of biopsies and will need 2 containers - 1 with red cap for lymphoma.  I was too stunned to ask why he was doing biopsy for lymphoma - never been mentioned before to me.  And when I was in the recovery room I am pretty sure that I heard the nurse saying my name and urgent (but i was in recovery so drugged so maybe not, hoping not!).  Anyway, has anybody else had lymphoma biopsies as part of a celiac scope?  Is this normal?  Trying to not think about it until I get results, but it is playing on my mind more than I like.  Thanks!

Given your circumstances, I would say it is normal and smart of your GI to check for lymphoma which is a very RARE complication of celiac disease.  You are fortunate that your doctor seems to be on top of things.  I would try not to worry (I know you are).  I would worry more, if he did not plan to check for lymphoma.  

You can develop other Autoimmune issues like Crohn's, etc or another issues (parasites, bacterial).  The symptoms for so many things tend to overlap.  Ask if other AI issues are are being ruled out.  

Refractory celiac disease is not common either.  Have you tried the Fasano diet?  You might be getting trace contamination from gluten.  Read more:

 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3598839/

Hang in there!  

 

 

Edited June 12, 2017 by cyclinglady

[Booiegirl 0]

Thanks.  They have ruled out most other AI issues - been tested for thyroid, diabetes etc.  Last time I was in he ran a slew of blood work and said he would get to the bottom of this.  He might send me to hematologist because of a few of the blood work results but wanted to do scope first to see if damage still there or not.  I haven't tried the Fasano diet but in reading that article I think it would be worth a try if the scope still shows damage, before being officially diagnosed with refractory celiac and going on steroids etc.  Really want to avoid that, if possible.  Just tired of thinking I am doing everything right and still having raised TTG levels, fatigue adn brain fog.  Really annoying!

 

[Fbmb 30]

1 hour ago, Booiegirl said:

Thanks.  They have ruled out most other AI issues - been tested for thyroid, diabetes etc.  Last time I was in he ran a slew of blood work and said he would get to the bottom of this.  He might send me to hematologist because of a few of the blood work results but wanted to do scope first to see if damage still there or not.  I haven't tried the Fasano diet but in reading that article I think it would be worth a try if the scope still shows damage, before being officially diagnosed with refractory celiac and going on steroids etc.  Really want to avoid that, if possible.  Just tired of thinking I am doing everything right and still having raised TTG levels, fatigue adn brain fog.  Really annoying!

 

I highly doubt you have refractory celiac. I've read research that suggests that, though it's real, it's highly unlikely. Even people who had been diagnosed but were put on a strict gluten-free diet ended up healing, which proved that they were accidentally ingesting gluten. That's not to say people with refractory celiac don't exist, because they do. But I used to worry about this all the time and people on this site taught me how rare it is and shared those articles with me. I try not to think of it as much. Can your TTG levels just fluctuate from time to time, and if you have an accidental exposure can you have elevated levels for a while? 

Regardless, I hope they don't find damage. You should know rather quickly. I had my results back within 4 days. 

[icelandgirl 91]

8 hours ago, Booiegirl said:

I just had my 3rd upper endoscopy after being diagnosed with celiac disease 6 years ago.  The reason for the scan is persistant raised ttg levels (70+) despite being strictly gluten free (our household is gluten free as well).  So my GI doctor is concerned about the possibility of refractory celiac, hence the scope.  My main symptoms would be fatigue and brain fog (but that could just be my life!), although I do have persistently low RBC counts, high MCV and high MCH results (but B12 and folate are in normal range, last blood work did not test ferriten).  My question is related to a comment that the doctor made to the nurses when they were prepping me for the scope - he said we will be doing lots of biopsies and will need 2 containers - 1 with red cap for lymphoma.  I was too stunned to ask why he was doing biopsy for lymphoma - never been mentioned before to me.  And when I was in the recovery room I am pretty sure that I heard the nurse saying my name and urgent (but i was in recovery so drugged so maybe not, hoping not!).  Anyway, has anybody else had lymphoma biopsies as part of a celiac scope?  Is this normal?  Trying to not think about it until I get results, but it is playing on my mind more than I like.  Thanks!

Hi Booiegirl,

I want to tell you not to worry, but I know that I myself would as I am a worrier.  That being said, it most likely isn't lymphoma or refractory, both being so rare.  

I'm so glad that your Dr is being thorough and checking everything out.  Hopefully you will get answers very soon as waiting often seems to be the hardest part.

Please do let us know when you find out.  Take some good care of yourself in the meantime.  ((((Hugs)))) 

[tessa25 79]

I'm only getting better on a strict, unhealthy liquid diet. My TTG IGA started at >100 and it only goes down on my liquid diet. I'm at 24 at the moment. If it makes me nauseous, my numbers don't go down. I tried ensure since it's a liquid and I wanted more nutrients, but I wasted a month. So no changes to the diet this month. I get my numbers tested monthly to get a handle on cause and effect.

My house is gluten free and I only eat at home. I'm only posting this because there is an area between celiac and refractory celiac. Not everybody fits in one of the buckets.

I would love to be on the Fasano diet as I always ate meat, potatoes, veggies before diagnosis, but I don't get better on any solid food. I'd give the Fasano diet a try if I were you. Works for most people I bet. But you might have to tailor a diet just for you. Start with a really basic diet of just a few simple, soft, easy to digest foods and see if your numbers start going down a month later. If so add on a few more and if your numbers still go down stick with it until they go all the way down. No cheating on your custom diet.

[crazymurdock 4]

Having elevated ttg levels would lean towards not having Refractory Celiac Disease. It is one of the first tests that a Celiac Center performs. There is still a small possibility to have elevated ttg and have RCD but it is not likely per the two Celiac Centers I have been to. 1% of Celiacs have RCD, so it is rare. There are two subsets of Refractory - Type 1 & Type 2. Type 1 can be usually treated through diet - like the Fasano Diet that was suggested above. Type 2 is not so easy. The attached link is from The National Institute of Health and explains some about RCD.    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2861306/ 

[artistsl 14]

Have you considered trying a B12 supplement despite? My son tested within range on B vitamin yet I gave him B12 despite and his lingering symptoms disappeared.