To Biopsy Or Not?

[roxweb]

I've recently been diagnosed as Celiac through a blood test. On top of the blood test results I also have had unexplained anemia for years, started having numbness in my toes, and have had at least another 1/2 dozen symptoms including severe headaches and unexplained fatigue.

 

Unlike many Celiacs however, I have always been over weight, not underweight. So when I talked to a nutritionist about getting some consulting on what to eat/ not eat, I was surprised that she seemed reluctant to "assume" I had Celiac simply from a blood test. She seemed to imply that given my weight problems, I should have a biopsy to confirm the diagnosis.

 

Now on top of my own issues, my grandmother suffered for years with rheumatoid arthritis and stomach problems that everyone told her were "in her own mind." She ended up with severe osteoporosis both as a result, I suspect, of Celiac disease but also because of the steroids the doctors were using the treat the arthritis.

 

Between her symptoms, and my own, plus the positive blood test, it seemed just unproductive to also get a biopsy, especially since I've already started a gluten-free diet, and the intestinal issues and symptoms I was having before this were quite uncomfortable. 

 

Is there any reason why, at this point in life (I'm 46 this month) that I should get further tested? Gluten-free is not convenient but it sure isn't going to kill me. While it seems like no big deal to go ahead with a biopsy, its just seems pointless. 

 

What would you do in this situation? I'm leaning toward forgetting about the biopsy and just sitting to my gluten-free and having the doctor do a follow-up blood test in 6 months or a year. I'd love to hear other's thoughts on it.

[kareng]

I would keep eating gluten until I got an endoscopy and colonoscopy.  You are about the age for a colonoscopy anyway.  That way, you can make sur there isn't any other issues.

 

That nutritionist is wrong.  I would suggest you see an actual registered dietician, but even these "real" medically trained dieticians often have no clue about gluten-free.  Seems like the non-medical "nutritionists" like to promote gluten-free for all (and sell products & additional tests).

 

There are published studies about obesity and Celiac disease.  I don't have time to find them right now.  Maybe google it.

 

 

 

https://www.celiac.com/articles/23211/1/Should-Patients-With-Morbid-Obesity-be-Tested-for-Celiac-Disease-Before-Surgery/Page1.html

[ravenwoodglass]

Welcome to the board. 

What were your blood test results? Were they high enough that your doctor was comfortable with diagnosing you without the endo? If that is the case then IMHO the choice of whether to biopsy or not is up to you. Since you have already started the diet the needed challenge for more testing could be quite unpleasant.

Do check out the Newbie thread at the top of the Coping page. That will give you quite a bit of info. 

Ask any other questions you need to and I hope you feel better soon.

[cyclinglady]

I am formally diagnosed last year (blood test and biopsy) and my main symptom was anemia. My husband was not formally diagnosed and went gluten free 13 years ago at the advice of my allergist and his GP. "Try giving up gluten and see how you feel". Well, he found that he felt great after some trial and error (biggest thing was learning about cross contamination). But, he would be the first to say that I have received more support from medical and from family and friends with my diagnosis.

If you have kids, nieces or nephews, siblings, I would go the extra mile. Why should the next generation suffer like your Grandmother? Having the diagnosis makes it easier for insurance to pay for things like a bone scan. I discovered that I had Osteoporosis too (fractures two months after my dx). But here is another thing to think about. I was barely positive on my blood test, yet my biopsy reveal moderate to severe damage. There was no way I was going to give up gluten until a had a firm diagnosis. I knew what gluten-free meant!

I did not opt for a blood test follow-up since my anemia resolved and I really know the gluten-free drill having cooked and shopped gluten free for over a decade.

If your doctor will give you an official diagnosis, then you might consider opting out of the biopsy. But take the blood test again to make sure there was not a lab error and do it before you go gluten free.

I wish you well!

[roxweb]

Thanks everyone for the thoughts. These were my blood test results:

 

Immunoglobulin A                              210 mg/dL              70-400

Tissue Transglutaminase IgA Ab       68.6 U/mL              <4.0 H

Gliadin Peptide IgA Antibody             98 U                       <20 H

 

The doctor felt I could just choose to go on the gluten-free diet or have the biopsy. Since I had just started with symptoms, I don't know how bad it might be going back on gluten, but if the past several weeks prior were any indicator I wouldn't want to willingly unless I really needed to. 

 

I do see the point of insurance coverage, although I'm already finding that nutritional education, specifically, while covered for diabetics, is not covered for Celiacs (doesn't make sense to me?). I also didn't realize that the biopsy could tell me anything more, other than the severity of the issue. Can the biopsy test alone provide more information about other problems I might have?

 

And thanks everyone, for all your help. This has been a bit overwhelming; I've felt like I'm on information overload ever since the results came back.

[Solandra]

I'm overweight also and opted out of the biopsy. I had a positive blood test and eating gluten free makes me feel better, and when I eat gluten, I feel horrible. I also have Hashimoto's which is strongly correlated. My doctor wrote "gluten enteropathy" on my records just because of the blood test, so I don't see any point in getting the biopsy. My dad had stomach issues and died of colon cancer at a young age, and I also had a genetic test done (on 23andMe) so I ran the raw data and I have one of the genes associated with Celiac, and an estimated 20% of people with that gene develop it. If you need more persuasion to follow a gluten free diet long term, get the biopsy and be 100% sure. But if you're anything like me, you'll fall off the wagon and feel like crap and then go.. oh yeah. Don't eat that.

[cyclinglady]

There are very few dietitians who are knowledgeable about the gluten free diet. They often do not do a good job for diabetes either! Check out our newbie section and learn about cross contamination, hidden sources of gluten, how to make your kitchen safe, etc.

https://www.celiac.com/forums/forum/5-celiac-disease-coping-with/

The biopsy will show damage, cancer and will test for items like SIBO which many celiacs suffer from. Before I gave up gluten for life, I would do the biopsy or repeat the blood test. But since you have been gluten free for a while I am not sure it would be worth getting back on gluten. You could not pay me to eat gluten (symptoms from accidental glutenings are bad for me now, weird, huh?)

I would keep your lab rests on file for future reference and in case you ever have a doctor who disputes your diagnosis.

I wish you well in whatever you decide to do.

[luvs2eat]

I visited a gastroenterologist at age 49 with symptoms of unrelenting diarrhea. He did blood tests and scheduled a colonoscopy because I was so close to the 50 year old screening age. After the colposcopy, he told me he had good news and bad news. I opted for the good news. He told me he could stop my diarrhea... the bad news? I couldn't eat wheat, rye, or barley ever again. He did not recommend endoscopic biopsy as my blood levels were so high. I did end up having an endoscopy and biopsies a few years later (heartburn issues) but my doc said it really wasn't necessary at the time of diagnosis.

[SMRI]

 

Thanks everyone for the thoughts. These were my blood test results:

 

Immunoglobulin A                              210 mg/dL              70-400

Tissue Transglutaminase IgA Ab       68.6 U/mL              <4.0 H

Gliadin Peptide IgA Antibody             98 U                       <20 H

 

The doctor felt I could just choose to go on the gluten-free diet or have the biopsy. Since I had just started with symptoms, I don't know how bad it might be going back on gluten, but if the past several weeks prior were any indicator I wouldn't want to willingly unless I really needed to. 

 

I do see the point of insurance coverage, although I'm already finding that nutritional education, specifically, while covered for diabetics, is not covered for Celiacs (doesn't make sense to me?). I also didn't realize that the biopsy could tell me anything more, other than the severity of the issue. Can the biopsy test alone provide more information about other problems I might have?

 

And thanks everyone, for all your help. This has been a bit overwhelming; I've felt like I'm on information overload ever since the results came back.

 

 

Those numbers are very conclusive..sorry, your nutritionist is just wrong.  I am overweight, had every test come back positive.  There is no question I have Celiac.  Not everyone with Celiac is underweight.  Your numbers are high enough that there is no question you have Celiac.  

 

My insurance does not cover nutritional counseling for any condition other than diabetes either.  I can give you, in a nutshell, what they told me for $400 .  Don't eat anything with gluten, read labels.  Stick with whole foods as much as possible.  For meals have a protein (meat or whatever) about 4 oz,  a large serving of vegetables and a small serving of a starch (potatoes, etc.)-about 4 oz.  I've lost about 10 lbs doing nothing different other than cutting out gluten.  I have more to go but they don't want me losing more than about a pound a week so this will be a year long process for me.  They had me track calories.  I used the SparkPeople website and that was very helpful.  It will help you determine how many calories you should eat each day and then be faithful to that.  Chances are you will be limited to about 1200-1400 calories depending on how tall you are.  It takes some getting used to but after a couple months, it's pretty easy.  I also was so run down that even walking a mile wiped me out.  Now that I have more energy, getting out and walking is easier so that helps too (when I have time to do that).

 

I also use the ShopWell app on my phone.  It scans the barcodes and will tell you if it has gluten (you set it to whatever you want to avoid in a food).  It's a good tool to use when you first get started, especially fishing out some of the obscure gluten sources.

 

Read the newbie 101 post on the coping page here too.  It gives you some ideas about where gluten hides--licorice was one that surprised me.  Also, if you use anything on your lips, lipstick, lip balm, etc., that should be gluten-free.  Hand lotion is another thing to be careful with since you will be handling food, etc.  It's easier if your household can go gluten-free but that is not always possible so make a gluten free zone in your kitchen if necessary.

[roxweb]

Those numbers are very conclusive..sorry, your nutritionist is just wrong.  I am overweight, had every test come back positive.  There is no question I have Celiac.  Not everyone with Celiac is underweight.  Your numbers are high enough that there is no question you have Celiac.  

 

My insurance does not cover nutritional counseling for any condition other than diabetes either.  I can give you, in a nutshell, what they told me for $400 .  Don't eat anything with gluten, read labels.  Stick with whole foods as much as possible.  For meals have a protein (meat or whatever) about 4 oz,  a large serving of vegetables and a small serving of a starch (potatoes, etc.)-about 4 oz.  I've lost about 10 lbs doing nothing different other than cutting out gluten.  I have more to go but they don't want me losing more than about a pound a week so this will be a year long process for me.  They had me track calories.  I used the SparkPeople website and that was very helpful.  It will help you determine how many calories you should eat each day and then be faithful to that.  Chances are you will be limited to about 1200-1400 calories depending on how tall you are.  It takes some getting used to but after a couple months, it's pretty easy.  I also was so run down that even walking a mile wiped me out.  Now that I have more energy, getting out and walking is easier so that helps too (when I have time to do that).

 

I also use the ShopWell app on my phone.  It scans the barcodes and will tell you if it has gluten (you set it to whatever you want to avoid in a food).  It's a good tool to use when you first get started, especially fishing out some of the obscure gluten sources.

 

Read the newbie 101 post on the coping page here too.  It gives you some ideas about where gluten hides--licorice was one that surprised me.  Also, if you use anything on your lips, lipstick, lip balm, etc., that should be gluten-free.  Hand lotion is another thing to be careful with since you will be handling food, etc.  It's easier if your household can go gluten-free but that is not always possible so make a gluten free zone in your kitchen if necessary.

 

Thank you so much for this. Your thoughts are pretty much where I was headed. Although I'll admit yesterday morning I was feeling great (no constipation, no upset stomach, no intestines in knots) and I thought to myself "you know maybe I don't have Celiac after all", which was a terribly irrational thought, because 2 seconds later I reminded myself that I'd just spent the past 2 weeks in the bathroom, and up until 3am in the morning with my stomach all wacked out. The pieces fit, I've also had others tell me the blood test was high enough to be conclusive. I have had amazing energy spurts that I haven't had in YEARS literally, so there's no going back, biopsy or not.

 

Oh and THANKS for mentioning the phone app! One of my biggest complaints about having to be gluten-free is trying to figure out WHAT is gluten-free (besides expensive pre-processed foods that are already marked). Simple things just throw me for a tizy making me paranoid that if it doesn't "say" specifically its gluten free (or I know its on a list somewhere) I'm scared to tears to eat it. I'm sure I'll get the hang of it in time, however.

 

Really appreciate everyone's feedback! It all helps!

[psawyer]

One of my biggest complaints about having to be gluten-free is trying to figure out WHAT is gluten-free (besides expensive pre-processed foods that are already marked). Simple things just throw me for a tizy making me paranoid that if it doesn't "say" specifically its gluten free (or I know its on a list somewhere) I'm scared to tears to eat it. I'm sure I'll get the hang of it in time, however.

It isn't really that hard. Learn to read labels. Wheat can not legally be hidden. There are a number of companies with a policy to clearly disclose any gluten source, including Con Agra, General Mills, Kraft and Unilever. Those companies cover a lot of brands, but look for the name of the parent somewhere on the label. If it is made by them, and you don't see a gluten grain called out in the ingredients, there isn't any there.

[icelandgirl]

I didn't have a biopsy. My GP did the bloodwork, told me you have celiac and stop eating gluten and sent me on my way. He should have referred me to a GI, but he didn't. I was so ill that I was just happy to have a diagnosis. 2 weeks later I had my gallbladder out and during that recovery started researching and found out about the biopsy. I was not willing to go back on gluten though. So...I never had the gold standard diagnosis and I'm OK with that.

By the time my referral for a nutritionist came back I'd been on this board for a bit and knew what to eat and not eat. Stick to whole foods for sure...that will help. Also, I think that Dr's just don't know enough about celiac. They think you can only have it if you're underweight and that's just not true. Your #'s are very conclusive.

Whatever you decide, I wish you the very best.

[Cara in Boston]

Keep in mind that you could have the biopsy and it could be negative, but this does not rule out Celiac Disease.  It might just complicate the issue, especially since you are already gluten free.

 

I started the testing process after my son was diagnosed.  As I learned more about it, I realized that I had many of the classic symptoms (except weight loss)  - I had been going to the doctor with complaints regularly for about 5 years.  My blood came back positive and it all made sense so I started the diet right away.  I immediately felt better than I had in years.  It was like a miracle.  Then my doctor wanted to do a biopsy.  It came back negative (after only 2 weeks gluten free).  He then backtracked and said I couldn't have it, blah, blah, blah.  His explanation for the positive blood test was "maybe the lab made an error?" . . . He couldn't explain why removing gluten from my diet virtually eliminated all my random symptoms.  Anyway, my son's doctor said it was clear I also have Celiac Disease.  My "official" medical record says I'm "gluten intolerant" since my doctor won't diagnose me because of the negative biopsy.

 

It is all very silly and I don't need an official diagnosis to change my diet.  But, I do worry that if I am every hospitalized or something like that (prison? I can't really think of any examples), I may not be able to automatically get accommodations  without an actual diagnosis.

 

It has been over three years now and I have never needed an actual diagnosis for anything.