Is it worth getting a second opinion?

[raemdee]

Hello all, I'm new here. I was recently diagnosed with celiac but am thinking about getting a second opinion. I know that a second opinion obviously can't hurt, but I'm curious if it's even worth doing so based on my results.

My initial bloodwork (attached) showed elevated Immunoglobulin and Deamidated Gliadin, but both of my TTGs were normal. It is my understanding that TTG is the pretty standard test to confirm celiac disease.

My doc still sent me for a endoscopic biopsy. Results of the biopsy were negative. Doc said that we may have caught it early enough that no damage has been done.

He then sent me for genetic testing. I tested positive for DQ2. This was enough for him to give me a celiac diagnosis.

I suppose the negative TTG bloodwork and negative biopsy have me wondering if I really do have celiac. I imagine getting a second opinion would result in getting the same tests done, likely with the same results (well, actually I have been gluten free for about 3 weeks so I guess I would have to start eating gluten again prior to getting a second opinion.)

Thoughts?

[trents]

Personally, I would consider the physician's advice to be wise in this case. What you don't want to happen is to ignore it and suffer irreversible damage to your body (e.g., bone demineralization) a few years down the road just because some of the indicators for celiac disease were not (yet?) positive. 

Something you did not address, however, is symptoms. I presume there were symptomatic reasons you got tested for celiac disease. If so, going truly gluten-free should result in feeling better. Notice I said, "truly" gluten-free. Numerous recent studies have shown that most people who claim to be eating gluten-free really aren't. They are actually practicing a low gluten diet because of cross contamination issues in food, medications and even cosmetics that go on the lips. And this is especially true for those who still eat out. When it comes to living gluten-free, you are either all in or your not in at all.

Edited July 23, 2020 by trents

[raemdee]

Just now, trents said:

Personally, I would consider the physician's advice to be wise in this case. What you don't want to happen is to ignore it and suffer irreversible damage to your body (e.g., bone demineralization) a few years down the road just because some of the indicators for celiac disease were not (yet?) positive. 

Something you did not address, however, is symptoms. I presume there were symptomatic reasons you got tested for celiac disease. If so, going truly gluten-free should result in feeling better. Notice I said, "truly" gluten-free. Numerous recent studies have shown that most people who claim to be eating gluten-free really aren't. They are actually practicing a low gluten diet because of cross contamination issues in food, medications and even cosmetics that go on the lips. And this is especially true for those who still eat out.

Hi Trent, thank you for responding. I've always had "IBS" but started having a sharp, constant pain in my RUQ back in March and it progressively got worse. Along with GI issues and weight loss, which I just attributed to my IBS. This was my indicator to see a doctor, and I eventually made the choice to see a GI doc after my primary wasn't much help. You are right, it is not worth risking it and eating gluten to possibly cause more damage just to get the same tests again and result in (probably) the same diagnosis.

I am only three weeks in so I am probably still ingesting gluten unknowingly. Most of the gluten food is out of my house (there are a couple of things my boyfriend is still eating that are kept on a separate shelf, but he has mostly gone gluten free with me) I have replaced all possibly contaminated kitchenware (wooden utensils, toaster, spatulas, colander) and bought new (gluten free) chapstick as well as replaced medicine. I'm sure there are still things that I am missing though. 

Thank you for your insight.

[Scott Adams]

The new protocol in children is to use only blood tests, and not a biopsy. I personally do not see any reason why this protocol should not also be followed in adults, other than we've got a lot of gastroenterologist fighting to keep these tests part of the diagnosis protocol:

 So I also side with your doctor in this case. The gut damage is the last stage of the disease, and you don't want to reach it.

[raemdee]

1 minute ago, Scott Adams said:

The new protocol in children is to use only blood tests, and not a biopsy. I personally do not see any reason why this protocol should not also be followed in adults, other than we've got a lot of gastroenterologist fighting to keep these tests part of the diagnosis protocol:

 So I also side with your doctor in this case. The gut damage is the last stage of the disease, and you don't want to reach it.

Hi Scott,

Thank you for your response, and for the article. It was very informative. I wish I would have known this prior to getting the endoscopy as it cost me $4,000 only to have negative results. I would have opted to just get the genetic testing to confirm, but the GI doc insisted on the endoscopic biopsy to confirm the diagnosis.

Thank you, I had not thought of it that way. Always a positive to catch things early.

[trents]

raemdee,

Welcome to the forum, by the way!

Learning how gluten is hidden by food industry terminology is part of the celiac disease education process. For instance, any food label that lists any kind of starch is immediately suspect unless it specifies that the starch is from a non wheat/barley/rye source.

The other thing is realizing that wheat is often found in prepared food products where you would never suspect it be used. One of the best examples is soy sauce. Most brands of soy sauce use wheat in the formulation. Read the labels on those the next time you are in the grocery store. Just yesterday I was looking at canned greens on Amazon (I'm originally from the South so turnip greens were a staple). I couldn't believe it but wheat was listed in the ingredients of two out of three greens products I looked at. Why on earth would you put wheat in something like that. On numerous occasions my wife and I have brought home things from the grocery store that it would never have occurred to us would have wheat included but found out that they did after reading the label. Wheat is used as cheap thickener in almost all canned soups. Check it out the next time you are in the grocery store. Canned tomato soup has wheat in it.

Medications, vitamins and supplements are perhaps the hardest thing to make a determination on with regard to containing gluten. There is currently another thread dealing with that in which we discovered together that only some brands of Pepcid H2 blocker are gluten free. And name brand Tylenol is not gluten free but Walmart Equate equivalents usually are. If you live near a Costco, it is handy to know that Kirkland is really good and specifying which of their OC medicines and supplements are gluten-free.

Restaurants may prepare non gluten-containing food on the same grill or use the same utensils as is being used for cooking gluten-containing foods. Hence,  you get cross contamination. 

Also, food companies can and do change their formulations over time such that what was once gluten-free is no more.

[RMJ]

In 6 to 12 months you should have the blood tests redone.  If the Deamidated gliadin IgA level goes down on the gluten free diet and if your symptoms improve, that would be evidence that gluten really is a problem.

[cyclinglady]

4 hours ago, raemdee said:

Hi Scott,

Thank you for your response, and for the article. It was very informative. I wish I would have known this prior to getting the endoscopy as it cost me $4,000 only to have negative results. I would have opted to just get the genetic testing to confirm, but the GI doc insisted on the endoscopic biopsy to confirm the diagnosis.

Thank you, I had not thought of it that way. Always a positive to catch things early.

The endoscopy can be invaluable in adults.  While it seems you caught the damage early (or it was further down in your small intestine beyond the reach of the scope) at least other things like Crohn’s or cancer were ruled out.  Kids do not normal have GI cancer and Crohn’s usually starts in teens and not in small children.  Opting out for an endoscopy is being done for children in Europe because the governments have to pay for them.  It is a way of safely saving money and let’s face it the procedure can be harder on kids.  
 

I am positive to only the DGP IgA.  I never have had a positive TTG or EMA, yet I had significant damage.  So, you never know.  Know that I am much older.  
 

I think you need to determine how many biopsies were taken and where.  Many GI’s fail to follow normal procedures in diagnosing celiac disease.  Know that it is easy to miss damage too as the small intestinal is actually larger than a tennis court.  
 

You can choose to ignore your diagnosis and later end up with cancer , add another autoimmune disorder, osteoporosis or anemia.    But I would suggest trialing the gluten-free diet and then get retested (DGP IgA) in six months.  If your result decreases, then it would seem like you really do have celiac disease.  Of course, improved symptoms are an added bonus.  
 

Your IgA is  not really high based on my lab.  It is just out of range For yours, but higher Immunoglobulin A can indicate cancer or autoimmune.  Mine is over 800.  Worrisome enough (my doctors) to be screened for cancer since I have already have had spinal fractures from undiagnosed celiac disease.  But talk this over with your doctor if you are concerned.  

Edited July 23, 2020 by cyclinglady

[trents]

It also needs to be said the endoscopy/biopsy of the small bowel is still the gold standard for diagnosing celiac disease. Your doctor was well within protocol in prescribing this procedure. And if there had not been an endoscopy/biopsy done then you would have nothing to compare it to should you have another one done at a future date for follow-up. Should you not seem to improve symptomatically then the doc may want to do a followup endoscopy/biopsy at a later date. We hope that is not necessary.

Edited July 24, 2020 by trents

[Kate333]

IMO the positive blood test + genetic test confirming you carry the celiac gene = pretty strong indicators of celiac disease, thus rendering 2nd opinion useless/redundant.    I also had negative EGD/biopsies but high ttg (200+).  Doc said I was "likely/possible" celiac.  I have didn't get a genetic test because not being a gene carrier would not erase the positive blood test result.   (I also suggest all your family members get a blood test because celiac disease is genetic and they should know whether they need to get treated, adopt gluten-free diets as well.)

Most celiac disease blood tests have a very high accuracy rate.  Also, IBS-like symptoms and unusual weight loss without trying (i.e., being on a weight loss diet) can also be classic symptoms of celiac disease.   BTW, you can have BOTH celiac disease and IBS (esp. if IBS is stress-related).   

"Most of the gluten food is out of my house (there are a couple of things my boyfriend is still eating that are kept on a separate shelf, but he has mostly gone gluten free with me)..." 

A friendly tip from one "newbie" to another:  This gluten-free diet is not the typical kind of "slim down" diet where you can celebrate or pat yourself on the back for "mostly" avoiding G or "only eating G rarely/occasionally".   Unfortunately, a gluten-free diet required of celiac disease patients is not effective at all unless ALL G is avoided.  No exceptions.  That is the ONLY way to heal yourself and remain healthy.  At least until a G vaccine is developed (hopefully in a few years).  And I would not share ANY meals with your BF.  Also, avoid oats, nuts because even in gluten-free in their original form, they can be "cross-contaminated" with G, processed in facilities that share equipment, processing, packing facilities with G crops.

I didn't realize that at first, but a learning curve is to be expected.  In the first months after my diagnosis, I drove myself crazy trying to read every single label on foods and wonder whether foods bearing a "gluten-free" label really were gluten-free (many labels are not accurate because most US food companies are not inspected or well-regulated for safety or claim accuracy).  After a few months, that exercise in tedium/anxiety drove me nuts.  So I decided it's just much simpler, easier, and cheaper to avoid ALL packaged and processed (which is chock full of artificial additives and chemicals) in favor of exclusively buying, cooking, and eating nothing but fresh foods (meat, fruits, veggies).

 

 

 

[Gemini]

1 hour ago, Kate333 said:

A friendly tip from one "newbie" to another:  This gluten-free diet is not the typical kind of "slim down" diet where you can celebrate or pat yourself on the back for "mostly" avoiding G or "only eating G rarely/occasionally".   Unfortunately, a gluten-free diet required of celiac disease patients is not effective at all unless ALL G is avoided.  No exceptions.  That is the ONLY way to heal yourself and remain healthy.  At least until a G vaccine is developed (hopefully in a few years).  And I would not share ANY meals with your BF.  Also, avoid oats, nuts because even in gluten-free in their original form, they can be "cross-contaminated" with G, processed in facilities that share equipment, processing, packing facilities with G crops.

I didn't realize that at first, but a learning curve is to be expected.  In the first months after my diagnosis, I drove myself crazy trying to read every single label on foods and wonder whether foods bearing a "gluten-free" label really were gluten-free (many labels are not accurate because most US food companies are not inspected or well-regulated for safety or claim accuracy).  After a few months, that exercise in tedium/anxiety drove me nuts.  So I decided it's just much simpler, easier, and cheaper to avoid ALL packaged and processed (which is chock full of artificial additives and chemicals) in favor of exclusively buying, cooking, and eating nothing but fresh foods (meat, fruits, veggies).

 

 

 

There is a lot of misinformation here that I wanted to address.......and this comes from someone who has been diagnosed and successfully gluten-free for 15 years.

You can safely eat processed, gluten free items and heal.  It might be better to go easy on them in the beginning but it all depends on what you can tolerate and whether or not you need to gain weight.  I usually buy products from dedicated gluten-free facilities and these you can trust.  If they are marked gluten-free, then they would have to test their product.  The Gluten Free Watchdog is invaluable for product testing results and warnings on what does not pass roster.  Companies that do not test their product before marketing cannot label them gluten free but they fall under the “no gluten ingredients used” category.  There are a few items I use that are like that but they are for sauces that contain tomatoes and single spices and very few ingredients. I have never, ever had a problem with them and I rarely, if ever, am glutened after 15 years.  Some of the major food companies are pretty good about information on potential gluten content in their products.  The comment about many food labels not being accurate I have found to be not true.  You also need to be able to read a label and figure it out because you have to do this for the rest of your life.

Go to Nuts.com and order your products from them.  Excellent company and their gluten-free line is certified. You can enjoy nuts with abandon!  This is a favorite site with Celiac’s.

I use certified, gluten-free oats regularly and have never had any problems but I ate a lot of oats pre-diagnosis.  You may want to wait awhile before you try them as per medical advice but I started back on oats after about 3 months gluten-free because I like them.  They agreed with me well and my blood work was excellent on re-test.  These are the dedicated grown, certified oats, not mainstream oats.  

Lastly, you absolutely can share meals with your boyfriend.......as long as he eats what you eat, period.  He can save the gluten filled stuff for outside the house/apartment.  Use your common sense with this and learn the right way to read labels...........you will be fine!  After awhile, it will become second nature.

[trents]

Second what Gemini is saying, particularly about the oats. Certified gluten-free oats are available from companies like Bob's Red Mill. Having said that, there is data out there suggesting that about 10% of Celiacs react to oat gluten (all cereal grains have a form of gluten but not all gluten is toxic) the same way they do wheat/barley/rye gluten, though I think there is still a question of whether or not those people are consuming truly gluten-free oats. If you aren't in that 10% you should be able to eat gluten-free oatmeal without issue and it's a nutritious and relatively inexpensive grain.

[raemdee]

18 hours ago, cyclinglady said:

You can choose to ignore your diagnosis

Hello,

I just want to note that I am not choosing to ignore the diagnosis, simply asking if it was even worth getting a second opinion. I have been gluten free for a few weeks now, obviously I will still make a few mistakes at this point as I am still learning but certainly am not ignoring it.

It does worry me a bit about what you said in reference to the immunoglobulin. I hope that your cancer screening came back negative and the high value was only the result of celiac, not cancer on top of celiac!

I do appreciate your advice, and hope I am not coming off as curt but so far I am getting a few responses that would indicate that I am not doing everything within my power to avoid gluten, but maybe my original post made it seem like I am not following the gluten free diet since I was thinking about a second opinion.

[raemdee]

15 hours ago, Kate333 said:

Gluten-free diet is not the typical kind of "slim down" diet where you can celebrate or pat yourself on the back for "mostly" avoiding G or "only eating G rarely/occasionally".  

 

 

 

Thank you for your response. I am 100% aware that this isn't a "fad" diet like so many think that it is. & I do want to clarify that when I said "mostly" I meant that not every single speck of gluten is completely out of the house. There are just a few items left in the cupboard that contain gluten. I did not mean that I was "mostly" eating gluten free. I am 100% eating gluten free foods, there just happen to be a couple of items left in the house that contain gluten.

I don't see the issue with sharing meals with my boyfriend because we both cook gluten free meals. We went gluten free grocery shopping together, and he knows what to look for as well, and if he's unsure about something he will ask me. 

I do plan to rid of my house of the remaining gluten items, just trying to find someone to donate them to as I find throwing food in the trash wasteful. 

[trents]

I never got the impression that you were not making a sincere effort to follow the gluten-free diet. It just seemed to me that there were still some gaps in your awareness of how gluten turns up in processed food products, meds and supplements.

Edited July 24, 2020 by trents

[raemdee]

12 hours ago, trents said:

Second what Gemini is saying, particularly about the oats. Certified gluten-free oats are available from companies like Bob's Red Mill. Having said that, there is data out there suggesting that about 10% of Celiacs react to oat gluten (all cereal grains have a form of gluten but not all gluten is toxic) the same way they do wheat/barley/rye gluten, though I think there is still a question of whether or not those people are consuming truly gluten-free oats. If you aren't in that 10% you should be able to eat gluten-free oatmeal without issue and it's a nutritious and relatively inexpensive grain.

 

22 hours ago, trents said:

raemdee,

Welcome to the forum, by the way!

Learning how gluten is hidden by food industry terminology is part of the celiac disease education process. For instance, any food label that lists any kind of starch is immediately suspect unless it specifies that the starch is from a non wheat/barley/rye source.

The other thing is realizing that wheat is often found in prepared food products where you would never suspect it be used. One of the best examples is soy sauce. Most brands of soy sauce use wheat in the formulation. Read the labels on those the next time you are in the grocery store. Just yesterday I was looking at canned greens on Amazon (I'm originally from the South so turnip greens were a staple). I couldn't believe it but wheat was listed in the ingredients of two out of three greens products I looked at. Why on earth would you put wheat in something like that. On numerous occasions my wife and I have brought home things from the grocery store that it would never have occurred to us would have wheat included but found out that they did after reading the label. Wheat is used as cheap thickener in almost all canned soups. Check it out the next time you are in the grocery store. Canned tomato soup has wheat in it.

Medications, vitamins and supplements are perhaps the hardest thing to make a determination on with regard to containing gluten. There is currently another thread dealing with that in which we discovered together that only some brands of Pepcid H2 blocker are gluten free. And name brand Tylenol is not gluten free but Walmart Equate equivalents usually are. If you live near a Costco, it is handy to know that Kirkland is really good and specifying which of their OC medicines and supplements are gluten-free.

Restaurants may prepare non gluten-containing food on the same grill or use the same utensils as is being used for cooking gluten-containing foods. Hence,  you get cross contamination. 

Also, food companies can and do change their formulations over time such that what was once gluten-free is no more.

Thank you for your response. I have been doing a lot of research on the gluten free diet and feel pretty confident about reading labels, although I'm sure I will still make a few mistakes here and there as I continue to learn. I have yet to go to a restaurant, there is only one in the area that I am confident enough to go to and that is because one of the owners has celiac and they have a dedicated prep area and dedicated fryer for their gluten free food.

I admit I am googling almost everything I buy that I can't read the label of, or e-mailing the company if I'm not sure. I recently bought some CBD tincture to help with pain and made sure to e-mail the company first to ask for the ingredients.

[raemdee]

5 minutes ago, trents said:

I never got the impression that you were not making a sincere effort to follow the gluten-free diet. It just seemed to me that there were still some gaps in your awareness of how gluten turns up in processed food products, meds and supplements.

Understood, and honestly I did not include any information in my original post about what kind of research I have done on the diet and if I had even started to follow the diet, so it was unfair of me to assume that anyone would know. I appreciate your advice.

[DJFL77I]

$4,000  for endoscopy?    that's really expensive..  mine was like $1,500

[raemdee]

13 hours ago, Gemini said:

There is a lot of misinformation here that I wanted to address.......and this comes from someone who has been diagnosed and successfully gluten-free for 15 years.

You can safely eat processed, gluten free items and heal.  It might be better to go easy on them in the beginning but it all depends on what you can tolerate and whether or not you need to gain weight.  I usually buy products from dedicated gluten-free facilities and these you can trust.  If they are marked gluten-free, then they would have to test their product.  The Gluten Free Watchdog is invaluable for product testing results and warnings on what does not pass roster.  Companies that do not test their product before marketing cannot label them gluten free but they fall under the “no gluten ingredients used” category.  There are a few items I use that are like that but they are for sauces that contain tomatoes and single spices and very few ingredients. I have never, ever had a problem with them and I rarely, if ever, am glutened after 15 years.  Some of the major food companies are pretty good about information on potential gluten content in their products.  The comment about many food labels not being accurate I have found to be not true.  You also need to be able to read a label and figure it out because you have to do this for the rest of your life.

Go to Nuts.com and order your products from them.  Excellent company and their gluten-free line is certified. You can enjoy nuts with abandon!  This is a favorite site with Celiac’s.

I use certified, gluten-free oats regularly and have never had any problems but I ate a lot of oats pre-diagnosis.  You may want to wait awhile before you try them as per medical advice but I started back on oats after about 3 months gluten-free because I like them.  They agreed with me well and my blood work was excellent on re-test.  These are the dedicated grown, certified oats, not mainstream oats.  

Lastly, you absolutely can share meals with your boyfriend.......as long as he eats what you eat, period.  He can save the gluten filled stuff for outside the house/apartment.  Use your common sense with this and learn the right way to read labels...........you will be fine!  After awhile, it will become second nature.

Thank you for your input, I do have a question as I have seen conflicting opinions elsewhere. Many Gluten Free or Certified Gluten Free food items may also have a label that reads "Produced in a facility that also produces wheat products." Some have said that this is OK as long as the product hasn't been produced on the same equipment as the wheat products. Others have said that this is not OK, and to avoid the product even though it's labeled gluten free. Thoughts? Or does it really come down to ones own sensitivity? 

& yes my boyfriend and I cook gluten free meals together, he hasn't had a problem going gluten free as well and is still welcome to eat gluten food outside of the house. We share meals often but they are always gluten free meals. If he's cooking it by himself, he always reads the labels and if he's unsure about something he will ask me.

[raemdee]

3 minutes ago, DJFL77I said:

$4,000  for endoscopy?    that's really expensive..  mine was like $1,500

I have high deductible insurance. My insurance covered...maybe $50 of it? The rest was my responsibility up until my $5,000 deductible was met. I should also note that my GI doc is based out of a hospital, which is why it was more costly. I was only quoted $2,000 from my insurance company so that's why I did not opt to see a different GI doc to have the procedure done. Had I known it would be $4,000, I would have definitely switched doctors. Too late now.

[DJFL77I]

I have no insurance and paid $1500..  they just charge too much wherever that is

[raemdee]

Just now, DJFL77I said:

I have no insurance and paid $1500

WOW. Well I'm glad it didn't cost you quite as much!

[DJFL77I]

" Some have said that this is OK as long as the product hasn't been produced on the same equipment as the wheat products. Others have said that this is not OK, and to avoid the product even though it's labeled gluten free. Thoughts? Or does it really come down to ones own sensitivity? 

i'd stay away from it

[raemdee]

Just now, DJFL77I said:

" Some have said that this is OK as long as the product hasn't been produced on the same equipment as the wheat products. Others have said that this is not OK, and to avoid the product even though it's labeled gluten free. Thoughts? Or does it really come down to ones own sensitivity? 

i'd stay away from it

Thank you for your advice!

[trents]

"Certified Gluten Free" is not the same as "Gluten Free" or "Naturally Gluten Free", necessarily that is.

Certified Gluten Free means it has actually been tested and proven to be gluten-free. This is the safest option. Gluten Free or Naturally Gluten Free often means only that no Gluten Free ingredients are intentionally included. These latter two do not necessarily mean there is no cross-contamination in production, harvesting, handling or processing. That is not to imply that they are necessarily not safe for Celiacs, just that you can't be sure. Some discernment is in order here. By the very nature of what they are, some foods that have no information about gluten content whatsoever will be gluten-free. An example might be Macadamia nuts. They will not likely come within a country mile of anything to do with wheat, barley or rye. But they very well may be processed on the same equipment with "other tree nuts". Dried fruit may be another example.

Another complicating factor here is the variance in sensitivity among Celiacs to minor amounts of gluten such as might be found in cross-contamination scenarios. 

Edited July 24, 2020 by trents