Is it worth getting a second opinion?

[Kate333]

1 hour ago, raemdee said:

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. 

Hi again Raemdee. 

I did not mean to imply that you (or BF) aren't devoted to gluten-free diet or making efforts.  I was just speaking from experience, recalling how challenging it was for me at first to learn all the nuances, complexity of gluten-free eating and how confused, frustrated I was when I thought I was doing everything right, only to have later blood tests still show positive for G.  Also, your "mostly" gluten-free comment made me think perhaps you were innocently exposing yourself to G risk...so common/easy to do in the months after diagnosis....:).  

  

[Kate333]

14 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.

You may not agree with my views esp. about food labels, corp. marketing practices, and lax food safety inspection/reg. enforcement practices, but it's not accurate to characterize them as "misinformation"...

For example, even products/facilities "certified" as gluten-free...are SUPPOSED to be regularly inspected, tested to ensure that is the case but, realistically, how many times does that happen in a country that doesn't even do a decent job preventing salmonella in produce and CV outbreaks in packing plants?  Other examples are foods labeled "organic"...."grass-fed"..."range free chickens"...."natural ingredients"...."heart-healthy" cereals.   I'm sure all those claims are true....:).  I'm just not as inclined to trust my health to a tenuous, non-existent corp. "honor system". 

I'm glad you don't have bad reactions any processed/packaged foods, even labeled ones.   I choose to not leave anything to chance by avoiding that stuff altogether.  Esp. after my GI doc advised me to only eat fresh, unprocessed, unpackaged, food because significantly high numbers of people with celiac disease still test positive for G exposure--even years after initial diagnosis...

Gluten Free Watchdog is great but too expensive and time-consuming to look up every product. 

Much easier to avoid all the second-guessing, worry and just eat simple, fresh meats, fruits, veggies.  But to each her own...:).  

 

 

  

[Gemini]

1 hour ago, raemdee said:

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.

 

[Gemini]

Hi Raemdee,

  I will reply later on to your questions on how to tell what is safe to eat that you asked.  Got some errands to do and it takes so much longer these days!  But I will say that your boyfriend is a keeper!  He sounds very supportive and that is huge!

[Gemini]

11 minutes ago, Kate333 said:

You may not agree with my views esp. about food labels, corp. marketing practices, and lax food safety inspection/reg. enforcement practices, but it's not accurate to characterize them as "misinformation"...

For example, even products/facilities "certified" as gluten-free...are SUPPOSED to be regularly inspected, tested to ensure that is the case but, realistically, how many times does that happen in a country that doesn't even do a decent job preventing salmonella in produce and CV outbreaks in packing plants?  Other examples are foods labeled "organic"...."grass-fed"..."range free chickens"...."natural ingredients"...."heart-healthy" cereals.   I'm sure all those claims are true....:).  I'm just not as inclined to trust my health to a tenuous, non-existent corp. "honor system". 

I'm glad you don't have bad reactions any processed/packaged foods, even labeled ones.   I choose to not leave anything to chance by avoiding that stuff altogether.  Esp. after my GI doc advised me to only eat fresh, unprocessed, unpackaged, food because significantly high numbers of people with celiac disease still test positive for G exposure--even years after initial diagnosis...

Gluten Free Watchdog is great but too expensive and time-consuming to look up every product. 

Much easier to avoid all the second-guessing, worry and just eat simple, fresh meats, fruits, veggies.  But to each her own...:).  

 

 

  

It might be my age showing here but if you are that worried about the food supply, you are going to have a tough time with this diet.  I am 61 and have been gluten-free for 15 years, long enough to know that you can eat processed gluten-free items, even if you are very sensitive like me, and live to tell about it......and live very healthy and well.  Most of my diet is a whole foods diet but like many, I do enjoy the occasional cupcake or cookie.  I have to eat bread as I weight train and am a thin Celiac.  Carbs are very important and not just the whole foods one’s.

What your GI doc said about significant numbers of people still testing positive, even years later, from eating processed foods is, in my humble opinion, a bunch of baloney.  There are many people with Celiac who take huge risks most serious ones would never take and that is why they probably do test positive.  There are other reasons, of course, but I have been astounded by the numbers that cheat.  I have other family members who are diagnosed and they cheat all the time.  I do not.  They resent the hell out of me for it and I don’t care.  Other Celiac’s I have met all cheat.  Honestly, the serious ones come to this forum.  My numbers on re-test have always been so low, the doctors are amazed.  When diagnosed, they were sky high......so I must be doing something right.  There is a balance with this but people can most certainly have dessert and not ruin their hard work.  Life is too short to not enjoy a cupcake or other treat that can be safely consumed without the fear that you are killing yourself.

This is not rocket science and the average person can educate themselves about the diet and live a healthy and normal life.  I am very distrustful of doctors. They seem to like to make people think they cannot do anything without their advice.  What I have learned is that a GI doctor generally knows a lot less than the average, well educated Celiac regarding the diet.  Unless of course, they are a Celiac themselves.

 

[trents]

I found this very interesting with regards to the terminology used in gluten-free food labeling. Apparently, Bob's Redmill has an in-house ELISA standard they use when they label a product "Gluten Free" and another standard when they use a "Certified Gluten Free" label. The latter meets the standards of the Gluten Free Certification Organization. They do not specify how the standards differ. I fired off an email to the company asking for how those two testing standards differ.

https://www.bobsredmill.com/bobs-way-gluten-free

Edited July 24, 2020 by trents

[Gemini]

1 hour ago, Gemini said:

Hi Raemdee,

  I will reply later on to your questions on how to tell what is safe to eat that you asked.  Got some errands to do and it takes so much longer these days!  But I will say that your boyfriend is a keeper!  He sounds very supportive and that is huge!

So, the questions about shared facilities and lines are good ones.  I usually always go with certified, dedicated facility options and have never had problems with those.  After all, if there is no gluten in the house, kind of hard to cc something.  However, I have had a few items from shared facilities with, again, no issues with the product.  I tend to pick items that are not likely to be manufactured with other gluten heavy food products, like baked goods.  Remember that if a company states gluten free on the package, they have to do testing of their product.  So, there are some safety precautions going on, with those.

There is a big difference between shared facility and shared lines.  I will try something from a shared facility sometimes but do not do the shared lines unless what is being produced is mainly gluten free.....like the Frontera brand, which I go into below.

One of the items I use that is listed as “no gluten ingredients” is from a company called Frontera.  It was started by a TV chef named Rick Bayless, who does the most amazing “from scratch” Mexican food out there.  Most of what he cooks on his show we could eat.  The ingredients list is simple and fresh and I have never had a problem with the products of his I have used.  Remember also that not all reactions come from gluten.  You may, after time on the gluten-free diet, discover other food sensitivities.  I did, and to this day, have to really limit the amount of dairy I eat.  I can eat ice cream one or two days in a week but no more than that or I get symptoms. I can also only eat one small scoop at a time.

So, it really is a matter of experimenting a bit and if you do not feel well after trying something new, then let it go and wait until you are fully healed.  If after a second time it doesn’t work, say good-bye and find something that is safe for you.  You will find that many mainstream companies like Peperidge Farm are coming out with their own gluten-free products.   They are all jumping on the bandwagon.  But they are labeled gluten free so they test the product.  I am pretty well healed after so many years so I find that has opened up my ability to eat more foods.  Not iffy foods that are a risk but mainstream companies who have products that include testing for ppm’s of gluten.  Just remember not to go crazy on them. It is so easy after being so restricted in the beginning. But in moderation, there are many things we can eat not possible when I was first diagnosed.

There is a company called Amy’s that has been around for awhile but many people have complained about being cc’d or glutened by their gluten-free products.  They are not dedicated.  I used to use their stuff in moderation but had a problem with one of their bowl dinners and stopped using them.  I have no idea if they have improved things in their manufacturing process.

Kraft foods are another company that are pretty up front with gluten content in their food line.

It really is not as hard as it seems.  Over time, you will become very proficient and will be able to easily tell if you can eat something or not. It does help to make most of your diet whole food but do not live in fear if you want to have dessert.  America’s Test Kitchen has some amazing gluten-free cookbooks that not only have great recipes, they outline why the recipe works, because gluten-free baking is another layer of skill to master.  They have great soup cookbooks too. For peace of mind, many products can be had that are certified.  If you need help finding things, ask.  We can point you in the right direction!

One more thing......I only eat bakery items from a dedicated gluten free bakery.  That damn flour just gets everywhere.  I am lucky that I live in a place that has many options for that but when I want a birthday cake that I do not have to make for myself, it has to be from the Celiac bakery.  That is one place where you wouldn’t be taking a big risk to eat cake. There is a famous donut shop here that now offers gluten-free donuts.  Kane’s is an institution here in New England.  I just cannot bring myself to eat their delicious donuts.  They are amazing but flour is flour and it is not a dedicated space.  They may clean well enough for someone without celiac but I just can’t try them.  Boo Hoo me.........😢

 

[trents]

I'm not sure that being produced in a dedicated facility insures that there will be no gluten contamination, unless that manufacturer takes it a step further and only uses ingredients that have been tested and proven to meet the gluten free standard. I'm sure it is difficult to police your suppliers of raw ingredients so the bottom line is the is still the testing of the final product for gluten content. 

[Gemini]

2 hours ago, trents said:

I'm not sure that being produced in a dedicated facility insures that there will be no gluten contamination, unless that manufacturer takes it a step further and only uses ingredients that have been tested and proven to meet the gluten free standard. I'm sure it is difficult to police your suppliers of raw ingredients so the bottom line is the is still the testing of the final product for gluten content. 

I don’t think that the issue of raw ingredients needing to be 100% free of cc matters.  If people think that they need to consume 0% gluten, then they will be relegated to eating fruits, veggies and meat only.  I don’t think that it is necessary for the vast majority of Celiac’s.  Final testing is what matters because it takes into account everything from beginning to end.

Most people heal on this diet jut fine eating to the gluten free standard set in the US.  The people that still have issues may have other underlying conditions that interfere with healing.  It cannot always be figured out easily.  As a very underweight Celiac at diagnosis, I needed to eat bread and other high calorie foods, along with protein, to gain the weight back.  My antibodies went from sky high to 1’s and 2’s on repeat testing after 1 year.  They have stayed there.  I eat some processed gluten-free foods and many others have done the same.  Not to mention that the amount of gluten in any given product that needs to meet the <20ppm standard, does not necessarily have 20 ppm in the end product.  It could be 0 or 1, for all we know.  

I just see too much fear out there with regards to processed foods. We are lucky to have companies make the effort for us or we would have pretty boring diets.  I am in no way saying not to be careful because I am careful.  But I have learned, by trial and error over 15 years, that there is a place for processed food in the gluten free diet for those who wish to partake.  There is safe processed food.  And for those who think you cannot heal eating this way, that is your opinion but it is not necessarily true.  Many people do just fine.  I didn’t even wait awhile before I ate bread.  I was starving so bought bread 3 days into the diet. It agreed with me just fine but I was so sick at that point from eating anything, there was only one way to go and that was up!  I had a very fast, positive response to the diet.

[trents]

I don't disagree with you at all, Gemini. But I was addressing the minority of Celiacs who seem for whatever reason to much more sensitive to small amounts of cross contamination. I hear you though. A person can go nuts trying to eliminate all gluten molecules in their lives. And I also believe you are probably correct in that for many of these folks the issues they struggle with may not be directly related to cross contamination but to other medical problems, and ones that may be traced back to the larger picture of their celiac disease.

[DJFL77I]

17 hours ago, raemdee said:

I have high deductible insurance. My insurance covered...maybe $50 of it? 

ya..  I don't know why people even pay for health insurance when they still have to pay thousands of dollars when having it

[cyclinglady]

I think most old timers recommend avoiding oats for the first few months.  Why?  Because that was the advice given out by the celiac centers years ago.  Once you feel better, you can experiment and see if you tolerate certified (purity grown) oats.  
 

I also push for real food and to avoid processed foods that contain ingredients that I can not even pronounce or find in the supermarket.    Most Americans have terrible diets.  I am old enough to remember that people used to be thin and fit.  (Just google classroom pictures going back decades).   Today, we have a huge population of fat and unwell people.  What changed?  Our food and our easy access to it, is my theory.   I recommend less processed foods in the beginning of a diagnosis because so many celiacs seems to have intolerances.  Some intolerances resolve and some do not.  It just makes it easier to identify those intolerances when you have simple ingredients (e.g. banana).  
 

I follow Trisha Thompson (the gluten-free Dietician). She also heads up The Gluten Free Watchdog (kind of a mini Consumer Reports).    A subscription helps offset her testing costs as she takes no sponsors.   She has found that 98% or more of the products she has tested have been gluten free.  Overall, food manufacturers have been doing a good job (if only we could get pharmaceuticals on board).  
 

I have been at this a long time.  My husband has been gluten free for over 20 years.  I carefully kept a shared kitchen.  But 12 years later, I was diagnosed.  What a shock!  (They say a couple becomes one and that is true in our case.).  It became easier for us to make the whole house gluten free.  You can get a little crazy over the diet.  I have been there.  Persistently, sick after a hidden gluten exposure (off the charts antibodies).    My GI recommending a repeat endoscopy and my doggedly trialing a super strict gluten-free diet that did not work for me.  I caved and got that much needed repeat endoscopy.  I learned a valuable lesson.  Not everything is due to celiac disease.  You can develop other illnesses and I did.  

There are many members on celiac.com.  Most just heal and go their merry way.  Life goes on.  

I firmly believe that we are each unique.  I believe there are sensitive celiacs.  I think I maybe one of them.  Is it due to celiac disease or my other autoimmune or hypersensitivity issues?  Who knows?  Even the top medical researchers do not know everything about celiac disease and they admit it.  We need more research, but I would prefer to delay any celiac research and put those resources to finding good treatments or a vaccine for COVID 19.  (I miss playing in my orchestra.). 
 

@Gemini — Nope I could not eat that gluten-free bread for about a year.  A cupcake yes, but not bread.   I spent the seven weeks between my blood tests and endoscopy scarfing down a loaf of sourdough bread a day.  I loved wheat bread.  I spend years baking my own bread and never buying commercially processed bread.  But time heals and memories soften.  I just had a delicious BLT with avocado last night for dinner (Little Northern Bakehouse). 🤣
 

 

Edited July 25, 2020 by cyclinglady

[Gemini]

Cyclinglady.......

It’s funny you should mention looking to older photographs regarding the fitness levels of people back then vs. today.  I have long said that also.  Not only are the food habits today really bad, but people just do not do the regular activities we did years ago that added up to keep us slender and fitter.  Cleaning your house, yard work, shoveling snow for those of us who live in colder climates, and hanging clothes out on the clothes line.......remember that?  Not that I think that is necessary but I remember lugging that damn clothes basket out back and having to hang heavy sheets and towels out.  It was not easy work but my mother made me do it.  😉. All these chores add up in calories burned.  I still do most of them except for the dreaded clothes line duty.  But, it is true.  I do not consider obesity a disease but a behavior issue......which can be changed.

I think there is a healthy balance with this stuff.  I do it, but I like to exercise and eat healthy.  I am “lucky” in that I am a thin Celiac and have remained so, even after gaining the necessary weight to be more normal.  When you exercise hard, you can have those extra cookies without damage and I like that!  😉  We also did not have those 7,000 calorie Starbucks drinks that are so popular.  Those Venti sizes are ridiculous!

As for bread, I was into the Whole Foods artisenal breads and they were good!  I always liked the peasant type breads that were dark and chewy. Little did I know they were killing me.  But when I was diagnosed, I was so sick that right away, I did not miss the old bread I was so used to eating.  The gluten-free bread did not taste bad to me.  Maybe it’s because I finally figured out how it was affecting me and i just lost all my yearning to eat bread that made me so sick.  When I ate my first slices of gluten-free bread, toasted of course, and I felt fine afterwards, that was it for me.  The bread was just fine.  I never had any trouble sticking to the diet because I never want to be that sick again, ever. It literally was killing me.

I agree with the other hidden issues one can have because I discovered the histamine problem I have just this year.  Who knew all that red wine I love was causing hives?  Gave that up and I no longer have the problem. It was the wine mainly and not the food.  So, yes, not all problems are caused by gluten and many Celiac’s have other issues which may be the real culprit.  Histamine can cause GI distress also and if you think doctors are bad diagnosing Celiac, run the histamine issue past them.  You’ll  get blank stares.  😳

[docaz]

On 7/23/2020 at 8:33 PM, trents said:

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.

The term gold standard is used for endoscopy but I am not sure that one can really apply it because the gold standard entails that it is the best possible way to confirm or to refute a diagnosis. I think that an endoscopy can only confirm (if read correctly and it is often not) but not refute the diagnosis because just like in this case there are so many negative biopsies and patients are diagnosed on blood tests alone anyway. I had that discussion with the specialist who diagnosed my own child who had high tTG IGA. I asked if a negative biopsy would change his opinion about the diagnosis and he replied that it would not because in case of a negative biopsy he would classify it as early celiac disease. I then asked why having a biopsy and exposing a young child to a general anesthesia which come fortunately very rare but serious risks if she will have to go on a gluten free diet anyway. He agreed that it would not make sense. It was not about the money because we have good insurance but I myself administer general anesthesia and any clinician who does it, knows that the risk is never zero and very, very bad unexpected things can happen especially in children who have lower respiratory reserves but also in adults and I have witnessed myself a couple of tragic situations during elective procedures.  It is very true that a biopsy result can be used for a baseline but it is very rarely used in this fashion. Not to be argumentative but to point out an alternative opinion, the more research I see, the more I question the need for a biopsy especially if the result will not make a difference in the diet recommendation. 

[notme]

my 2 cents - many of us had a terrible time getting diagnosed.  if you have a celiac dx that you didn't hafta fight tooth and nail for, take it at face value.  i still have encountered some doctors who doubt that celiac is serious.  which it is.  and, yikes!  i wouldn't want to spend any more $$ on a second opinion....  your numbers support a celiac diagnosis i would think.   (i am sciency dumb) (also math)  (unless it involves money lolz)  

there is a locked thread in the coping section called 'newbie 101' maybe take a gander.  lots of tips and trickssss.  welcome to the forum.   

[cyclinglady]

@Gemini

I use a clothes line still!  Nothing like sheets on the line.  Smells like sunshine.  In the summer, clothes can dry in 1 to 2 hours in Southern California.  Free energy too.