Biopsy Back

[arlingtonmom]

My doctor just called, and said that my biopsy did not indicate any signs of celiac. I believe she's a good doctor. She studied under Dr. Green at Columbia so she's well versed in Celiac, and she took many biopsies (12, I think). She also offered to send the slides to another pathologist that has extensive experience in Celiac, which I'm going to do just in case.

So, now, I'm left with negative blood tests and a negative biopsy. However, Enterolab said I had the DQ2 gene, and another gluten sensitive gene, and enterolab also indicated that although I was not yet having an autoimmune response I was producing antibodies to gluten, and therefore, should permanently eliminate gluten in order to prevent further symptoms or damage.

So, thanks to all the knowlege I've gained from this board, I know my next step is to try the gluten-free diet, and see if I feel better. Here's my question. My doctor said that if I am non celiac gluten intolerant then gluten just makes me feel bad, but it won't do any damage to my body. Therefore, if I feel better gluten-free, great, but I don't have to worry about cross contamination or trace amounts if it doesn't effect how I feel. Are there any studies that show systemic damage due to ingesting gluten when someone is non celiac gluten intolerant. If not, I'd love to know about people's opinions and experiences regarding this.

I'm just afraid that I've been given a license to cheat, but 10 years from now I'm going to end up diabetic because I continued to eat small amounts of gluten. On the other hand, I don't want to limit my lifestyle and restrict everything if not necessary. Any thoughts?

Thanks

[Emily Elizabeth]

Wow. That's a difficult situation. I definitely feel for you. I would probably go gluten free and not worry about the trace amounts at first. Even those of us with Celiac have a hard time avoiding the trace amounts in the beginning especially. Then once you've got the diet down, if you are still feeling symptomatic, start avoiding all trace amounts as well. Either way, it would be good to go in for an annual check up to find out if you are still producing antibodies. As far as I know if you stop producing them then you are doing okay. But I honestly don't know much. I was just diagnosed back in May! Good luck!

I'm just afraid that I've been given a license to cheat, but 10 years from now I'm going to end up diabetic because I continued to eat small amounts of gluten. On the other hand, I don't want to limit my lifestyle and restrict everything if not necessary. Any thoughts?

[ravenwoodglass]

My doctor just called, and said that my biopsy did not indicate any signs of celiac. I believe she's a good doctor. She studied under Dr. Green at Columbia so she's well versed in Celiac, and she took many biopsies (12, I think). She also offered to send the slides to another pathologist that has extensive experience in Celiac, which I'm going to do just in case.

So, now, I'm left with negative blood tests and a negative biopsy. However, Enterolab said I had the DQ2 gene, and another gluten sensitive gene, and enterolab also indicated that although I was not yet having an autoimmune response I was producing antibodies to gluten, and therefore, should permanently eliminate gluten in order to prevent further symptoms or damage.

So, thanks to all the knowlege I've gained from this board, I know my next step is to try the gluten-free diet, and see if I feel better. Here's my question. My doctor said that if I am non celiac gluten intolerant then gluten just makes me feel bad, but it won't do any damage to my body. Therefore, if I feel better gluten-free, great, but I don't have to worry about cross contamination or trace amounts if it doesn't effect how I feel. Are there any studies that show systemic damage due to ingesting gluten when someone is non celiac gluten intolerant. If not, I'd love to know about people's opinions and experiences regarding this.

I'm just afraid that I've been given a license to cheat, but 10 years from now I'm going to end up diabetic because I continued to eat small amounts of gluten. On the other hand, I don't want to limit my lifestyle and restrict everything if not necessary. Any thoughts?

Thanks

All I can say is check out my signature. I found out yesterday, almost 5 years post diagnosis that technically I do not have the recognized celiac genes. It took a long time for me to get diagnosed and I had a great deal of damage. The majority of problems that have not resolved began long before the D set in. If I were in your shoes I would go strictly gluten free there can be a lot of damage before GI problems set in. I have a feeling after you have been gluten-free for a couple of months that first "well it won't hurt me that much, after all I can't be 'celiac'" excursion into cheating will clearly show you that it is not something you should do.

[Guest Doll]

First of all, you need to make the choice that is right for you. Only you and your doctor can really decide. Some people might say no CC, others might say it's less harmful than if you had Celiac. I don't think anyone on here can say what is the best choice, although most of us would say better to be safe than sorry.

You may (or may) not need to worry about CC. It depends.

From what it seems like, you have DQ2 genes, which are related to Type 1 diabetes, Celiac Disease, Hashimoto's Thyroiditis, etc. You also have antibodies against gluten, but no autoimmune intestinal damage. You may or may not have the additional genes needed for these diseases to develop (more than just DQ2 is needed).

This is something that could have a huge impact either way in your life, so explore your options.

What I would do (if you can):

(It seems like you have a good doctor, which is good!)

-See if you can have a "gut permeability" test to see if you actually have a leaky gut and not just one of the genes related to autoimmunity (DQ2). Without the leaky gut, you have less cause for concern, at least at this point in time. There is some evidence to suggest that gluten itself can make an already leaky gut leakier, so you may want to think about that. If you have those additional genes needed for Celiac and/or other autoimmune diseases, you may still get them at a later date if you have a leaky gut and/or eat gluten. Do realize though that other factors like viruses etc. are likely involved.

-You may also want to be tested for antibodies to your islet cells (Type 1 diabetes), thyroid gland (TPO antibodies to check for Hashimoto's), etc. to see if you are at high risk for developing them in the near future. If any results come back positive, I would be very strict on the diet.

Type 1 diabetes usually first appears in childhood, and is not all that commonly diagnosed in adults (although it does happen, don't get me wrong). Adult onset diabetes is usually Type 2 diabetes, which is the common kind NOT related to Celiac genes/autoimmunity, and can usually be prevented with a healthy diet, weight loss, and regular exercise. Type 2 diabetes is the kind that is always in the media and turning into an epidemic due to rising obesity rates.

This is a toughy! I will say that the gluten-free diet does get easier. Avoiding CC is a pain, but after awhile, it becomes routine. We are here to help!

All I can say is that if you have DQ2 and a leaky gut (which is likely if you are reacting to gluten), you should be on a strict gluten-free diet. The exception to this would be if you tested negative for any of the other genes needed to get other autoimmune diseases. This would help, but would not be routine testing nor 100% any kind of guarantee.

However, there are other causes that can cause reactions to gluten, which is why you might want to consider further tests. If any are positive, they might give you incentive to be strict with the diet. If negative, you *may* not need to be as strict. Again, that is a personal choice.

[gfpaperdoll]

I wonder if in your situation that your doc would take her own advice!!! I really think not.

I think that you will feel a ton better gluten-free & will be like all of us once gluten-free there is no way that CC is not going to make you sick as a dog.

really it is what you want to do, nothing to do with your doctor. the doc is not the one whose life is going to be ruined when your health goes down the potty, so to speak

yea, just check these boards & see why we old timers spend our time trying to help some of the young ones from repeating our mistakes that we will pay for the rest of our lives. Not that we ever knew anything about gluten or had our docs tell us, no our mistake was ignorance which cost us our health not counting all the wasted years...

so think about it & make your own decision but remember once you get cancer or another auto-immune illness you cannot wish it away.

[tom]

-See if you can have a "gut permeability" test to see if you actually have a leaky gut

Hi,

What test is that?

[arlingtonmom]

Thank you so much for all your insight. I guess all I can do is start the diet, and go from there. I also would like to look into further testing. Like Tom I'm wondering what's the test for gut permeability? Osteoporsis does run in my family and so does thyroid problems, so I'm also going to push for a bone density. Are there gene tests that determine is someone is susceptible to thyroid problems. Again, thank you so much for listening and the sound advice. gluten-free, here I come.

[neesee]

Hi,

What test is that?

I had a permeability test when I was diagnosed. They put some chemicials in a clear liquid and had me drink them. Then they collected my urine for 24 hrs. Nothing to it! However, I never did learn the results, they just waited for the biopsy results and told me I had sprue. I had been in the hospital for a good 2 weeks by then. I was so sick! Every moring the nurses would go down to peds floor to get some fresh pjs for me. I was a mess. Anyhow 20 yrs later I'm doing pretty well. I have good days and bad days, like everyone here. I'm not dying anymore. I am so grateful for the diet!

neesee