Told Again, No Celiac? Told Twice Celiac. Confused!

[zenjess1980]

So I was told again by my GI doctor that I do not have Celiac Disease because my biopsies were negative, and I do not need to be eating gluten free (I had been seeing my GI doctor previously who diagnosed me with non Hodgkin lymphoma of the duodenum - part of the intestine. I am since in remission.)

I have been told twice by 2 different doctors that I do have Celiac Disease based on my blood work. 

And I have been gluten free (mostly) for somewhere around 7 or 8 months I am guessing.

But, admittedly so -- I keep hearing the GI doctor in my head saying "you don't have to eat gluten free" - so I have cheated a handful of times over the last 7 or 8 months (please no mean comments on this. I'm truly confused, at a loss, etc. I do not want to have Celiac Disease, but I understand that if I truly do have Celiac, then I *must* be gluten free.)

I have posted on this forum several times, and it has provided me with support in the past. So here I am again. 

 

I got a copy of my Celiac Panel blood work results, and I was wondering if anyone can help decipher/explain? There are no notes and limited reference ranges even given.  Thank you!!!

 

Gliadin IGA Antibodies 8.7 HIGH --- reference <5

TTG IGG -- 2.8 (no reference range given)

TTG IGA -- 1.6 (no reference range given)

 

[Gemini]

Oh, my......where to begin???????

When I look at your signature and see how VERY many conditions you have that are associated with Celiac Disease, and the fact that you suffered the cancer that is directly connected to long standing un-diagnosed Celiac, I want to pretty much hire a hit man to take out the GI doctor who is giving you such bad and dangerous advice.    I know that your biopsy was negative but that is not uncommon. You probably had patchy damage that they missed. I know that they mucked up and did not do a full Celiac panel on you but the test they did shows you are reacting to the gluten you are eating. Because of doctor error and the fact that you most likely had patchy damage, this GI doc is playing Russian Roulette with your health.  All I can say is LISTEN to the 2 other docs and do research on associated conditions and the cancer you suffered. You asked for advice from us so I implore you to accept you have Celiac and go strictly gluten-free for the rest of your life. It could make the difference on whether you have a relapse of your cancer or live a long and healthier life!  Dump the doc who is playing with your health.

Take care! 

[squirmingitch]

I could not agree more with Gemini. Ditch that GI doc & get someone else. Just tell the new GI that you have been dx'd celiac (because you were by 2 docs & 2 beats 1). 

You've been through enough sweetheart, you just need to eat strictly gluten free now & start healing in earnest.

[zenjess1980]

Thank you Gemini and squirmingitch for your replies, I really appreciate it! Yes, I knew that duodenal/intestinal non Hodgkin Lymphoma was highly associated with untreated Celiac Disease (I did some research, but the 'do I have celiac do I not have celiac?' has been a back and forth question with doctors for a while.)  Needless to say I was pretty shocked/confused/angry when going in for my biopsy for Celiac, and they found the Cancer but said no Celiac.  My GI doctor seems pretty adamant that I do not have Celiac. My last PCP and my integrative medicine doctor both said I do have Celiac (labeled it Latent Celiac Disease).

I admit since going gluten free, I feel better. MUCH better. I have less symptoms. And, of course, if the Cancer was from un treated Celiac, I am grateful to have something on my side to at least help to ensure no relapse. With that said, since the question has been so much a back and a forth thing, and people in my life have seen me both eat gluten, and be gluten free,  and have only heard I don't have Celiac (but haven't heard for themselves that I do) - I am getting a lot of "you can cheat, it's the holidays. you can go back to eating gluten free after." and... with the holidays coming up, I do not have gluten free options with my wife's family unfortunately...

Anyway, I kind of got off subject here.

 

Thank you again!!!

[Gemini]

I think the hardest thing to grasp for many people is the fact that doctors are not infallible, they are only human and they definitely do make mistakes. They are trained to believe that if they cannot find compromised villi, then there is no Celiac. With this disease, you have to include a number of other factors such as associated conditions and certainly, cancer that is associated strongly with celiac disease. That should be a huge wake-up call for them. I won't even go into your positive blood work, albeit only one test, but a very telling test. You are reacting to the gluten you are eating.  It is the older test they used but it was the test that was available when I was diagnosed 11 years ago and it is a valid test.

As food is such an emotional subject with people in general, you have to learn to stand up for yourself. I can't think of any other disease where people are hounded by relatives and friends to cheat. Maybe diabetes but that gets more respect than Celiac does. People understand diabetes better. Not having gluten free options at your spouse's family gatherings is no excuse for not sticking to the diet.  I do not mean to sound harsh but you must learn to take your own food if nothing else safe is available. Your spouse needs to defend you when you are under attack. Trust me, my family were not receptive to what I was telling them and I had harsh words for those who tried to undermine me. My mother was the worst because she has symptoms also and will never go gluten-free or believe that could be the root cause of her many symptoms.  I really do not care anymore. I made it very plain that I would not be eating their food, I wanted respect for the disease I had or I would not be attending any of their family gatherings. You do what you have to do for your health and well being. I have also endured, in the beginning, the snarky remarks about eating healthy, gluten-free foods at gatherings while they all were eating crap. I would just look at them and ask if there was a point they were trying to make.  They would end up getting embarrassed because they knew they were being jerks so it was a win for me. You have to grow a very thick skin with this disease and, while that shouldn't have to be, it is reality in many cases.  We understand totally. 

So....find a new GI who understands the whole picture and won't try to kill you because he can't find the definitive proof he needs to convince his small mind. Bring your food everywhere you cannot find a safe meal......a really safe meal. Then learn to handle the dummy's who just don't get it and try to derail you from your mission to stay healthy and cancer free.  You can always come on here to ask for help!

 

[squirmingitch]

Amen to that.

[zenjess1980]

2 hours ago, Gemini said:

I think the hardest thing to grasp for many people is the fact that doctors are not infallible, they are only human and they definitely do make mistakes. They are trained to believe that if they cannot find compromised villi, then there is no Celiac. With this disease, you have to include a number of other factors such as associated conditions and certainly, cancer that is associated strongly with celiac disease. That should be a huge wake-up call for them. I won't even go into your positive blood work, albeit only one test, but a very telling test. You are reacting to the gluten you are eating.  It is the older test they used but it was the test that was available when I was diagnosed 11 years ago and it is a valid test.

As food is such an emotional subject with people in general, you have to learn to stand up for yourself. I can't think of any other disease where people are hounded by relatives and friends to cheat. Maybe diabetes but that gets more respect than Celiac does. People understand diabetes better. Not having gluten free options at your spouse's family gatherings is no excuse for not sticking to the diet.  I do not mean to sound harsh but you must learn to take your own food if nothing else safe is available. Your spouse needs to defend you when you are under attack. Trust me, my family were not receptive to what I was telling them and I had harsh words for those who tried to undermine me. My mother was the worst because she has symptoms also and will never go gluten-free or believe that could be the root cause of her many symptoms.  I really do not care anymore. I made it very plain that I would not be eating their food, I wanted respect for the disease I had or I would not be attending any of their family gatherings. You do what you have to do for your health and well being. I have also endured, in the beginning, the snarky remarks about eating healthy, gluten-free foods at gatherings while they all were eating crap. I would just look at them and ask if there was a point they were trying to make.  They would end up getting embarrassed because they knew they were being jerks so it was a win for me. You have to grow a very thick skin with this disease and, while that shouldn't have to be, it is reality in many cases.  We understand totally. 

So....find a new GI who understands the whole picture and won't try to kill you because he can't find the definitive proof he needs to convince his small mind. Bring your food everywhere you cannot find a safe meal......a really safe meal. Then learn to handle the dummy's who just don't get it and try to derail you from your mission to stay healthy and cancer free.  You can always come on here to ask for help!

 

Thank you again for your reply. I agree that people respond to Diabetes much more than Celiac. I suppose because they understand it better. The old myth that Celiac is "rare", is just that... a myth... And I appreciate your honesty about me being my own best advocate. Again, thank you.  I think I really need to sit down with my wife and speak with her about being my advocate too.  Being that I am Diabetic as well, and my wife is VERY much an advocate with that, I can only hope that she can be with this too. It's strange, b/c in my every day life it's more 'normal' and 'acceptable' for me to not eat gluten.  Ignorance on other people's parts is NOT bliss, so to speak.  And *nod head* ~ yea, like I had said earlier, the shock/confusion/anger I have experienced re: Celiac/Intestinal Cancer and my GI assuring me I do not have Celiac and I need not be gluten free, has messed with my mind, so much so that I have indeed cheated a handful of times (because let's face it... who actually wants to have Celiac Disease and be gluten free? Yes, I feel TONS better, but the food overall just isn't as yummy IMO.) Hmmm, growing thick skin. I am glad I am not alone and that people understand. That you all understand. Thank you!!!