LauraTX

My symptoms are similar to yours, sometimes less so.  I am glad you still plan on keeping gluten-free, it pains me to see other people with little reaction eat gluten and think it is not harming them.  I was basically diagnosed by accident when I was having gallbladder and ulcer issues, and my GI doctor did say that I am lucky it was caught early in the disease progression.  But a good way to say with Celiac is that it is like a pregnancy test, either you have it or you don't.  

For me, it makes me more paranoid because I could get hit with cross contamination and not even know it.  So I am extra diligent about things.  It makes me grateful that I did not go through years of undiagnosed damage like some unfortunate people have.  It is a good idea to get your antibody levels tested at each checkup to make sure you aren't off track without knowing it, too.

Just an update on this post. I spoke to my GI doctor today after my endoscopy. She mentioned that if the biopsy results show no damage I would not have Celiac disease since my biopsy is negative and my TTG level is only low positive? She said I would be classified as "gluten sensitive".

 

I have done some of my own research and it seems that gluten sensitivity does not raise TTG levels. I also am pretty sure I can eliminate the other diseases that may cause positive TTG as I have had extensive bloodwork, CT scan, x rays completed this month.

 

As I have already had bloodwork and endoscopy done now, I think I might just jump the gun and try gluten free before biopsy result to see if I feel any better. 

If for some reason the biopsies (hopefully many were taken as damage can be patchy) come back normal, which will take a while for a pathology report to come back, do a double check to see if any other bloodwork can be done.  Here is a list of tests that can be done to help a diagnosis.

You can change the font when you are writing a post.  There is a drop down box at the top of the box you are writing in that says "font".  Click that and you can select one that is easier for your eyes.  You may have to click "more reply options" to see that text editing part.

This is why we made my kitchen completely gluten-free after similar incidents kept happening and my husband said he is only human and not perfect.  So we no longer keep regular bread in the house.  Only a few packaged products that he takes to work for lunches.  We finally came across canyon bakehouse 7 grain bread, and he really likes it.  So, if you are willing to eat the cost in order to make your kitchen safe, check that out.  It doesn't need toasting or anything.  (I tried it after hearing people rave about it on here, lol)

If milk bothers you, then what the cows are eating and whether or not it is pasteurized is not likely to make a difference.  If lactose is your issue, you may want to try drinking lactose free milk for a while to see if that helps.  But overall, you'll just have to get your calcium Open Original Shared Link. Drinking raw milk has some Open Original Shared Link, I recommend being informed on those, as well.

Grains are not excreted into the milk.  There is no cross-reactivity with milk, see the University of Chicago's Stance on that Open Original Shared Link.  Milk is a safe gluten-free food for those with Celiac disease that can lack lactose intolerance.

Yes, a low IgA total means your transglutaminase IgA test could potentially be a false negative.  Definitely encourage your doctor to do more tests, and follow up with your primary care doctor on your IgA levels being low, to make sure you don't need that looked into.  And if you have other children, encourage them to all get testing done.  Here is a list of tests you can ask for.  If your IgG is normal, you can rely on those instead of the IgA versions of the tests.  Definitely make sure they pull a total IgG to make sure they are valid.

Welcome to the forum and let us know how it goes!

Medications are held to a much higher regulatory standard than supplements are.  Medication manufacturers have things called Good Manufacturing Practices they have to adhere to... one big thing is preventing contamination from other medications. That is hinted at in the article when they talk about the air quality control that is required.  Basically, if they are keeping dust that contains other medications out of your medicine, everything else is being kept out, too, at the manufacturer's level.  I like how they talk about Olmesartan in this article and how it causes Celiac-like symptoms.  It is important to remember that not just that medication, many really, can cause gastrointestinal side effects, and remind ourselves that not everything is because of gluten.  

It makes me think of people who say they are allergic to medications because "it made me feel a little jumpy" or "it made me constipated", etc.  Not a true allergy.  Lots of medications cause stomach pain, "D", etc. and that is important to keep in mind.

Okay, I will end that rant... pharmacy technician/ pharmaceutical manufacturer in me talking here.  

Agreed with Karen and Ruth here.  Obviously testing isn't going to happen here.  Sometimes the best thing you can do is back off a bit, offer to tell them what the good tasting brands are, etc. And let them know you are available to talk.  I think dropping off bread is an awesome idea, too.  A lot of people want to go about things their own way... sadly not always the right way.   If you guys shop at the same stores, you can offer to go with her to the store to point out gluten-free stuff other than the obvious things.

I heard back from Lean Cuisine.  They are made on shared equipment, with a thorough cleaning regimen.    They did not answer my question on whether or not they test the finished product.

"Thank you for taking the time to contact us about LEAN CUISINE®. We welcome questions and comments from loyal consumers such as yourself and appreciate this opportunity to assist you.

All attempts are made at our production facilities to prevent cross contamination of gluten into other products not containing these ingredients. After a product with gluten is produced, all equipment that comes in direct contact with the gluten is completely disassembled and cleaned thoroughly prior to resuming production. Where possible, products containing gluten are scheduled to occur during a two-shift operation, followed by a clean up of equipment. When only one shift of product is needed, it is scheduled so that a clean up will occur at the conclusion of production and prior to making anything else on the equipment. 

The following products are gluten free and are clearly marked on the front of the package. 

Rancho Braised Beef 
Herb Roasted Chicken 
Chili Lime Chicken 
Chicken Marsala 
Fiesta Grilled Chicken 

We listened to our consumers and are working to create more gluten free items. Please check the front of the package for those items that are clearly marked "gluten free." 

We appreciate your interest in our products and hope you will visit our website often for the latest information on our products and promotions."

For things packaged in other countries, the best way to get information is to write the company.  However, I highly doubt anything else would be handled near smelly durian... LOL.  

Edit: I hear durian is actually tasty it just imparts a deathly smell all around it.

Awesome links, Thanks Karen!

Honestly, I think it differs for everyone. I have heard people say they felt better after two weeks, I've heard two months. As for me, I think it takes longer every time I break my diet. (Hard headed in-laws that don't understand, no matter how hard you explain celiac are the worst!)

Welcome to the forum, Aria!

I strongly urge you to keep strictly to a gluten-free diet if you have Celiac disease.  If your in-laws are hard headed and coerce you into eating gluten, it is a good idea to remove yourself from the situation and not do that.  Cheating on a gluten-free diet will make people not take you seriously in the long run, and most importantly, can lead to things like cancer.  The payoff of peace now is not worth the long-term health risk.

If you aren't able to get them done with current resources, then going ahead and trying out a wheat free diet is the next step for sure.  If you are able to keep a diary of what you eat and any symptoms you have, you may be able to pinpoint whether it is a gluten issue or a wheat issue.  I would lean towards avoiding all gluten for now, as that is more common than just a wheat issue.  But that is your decision to make.  Just know that if you ever want to be formally tested for Celiac in the future, you would have to have a period where you consume gluten again before the tests are done.  There are many people here on the forum that don't have a formal diagnosis for various reasons, and they are okay with that.  

So, check out that newbie 101 thread I linked, there are lots of things to start from there.  Give away all wheat/gluten containing items from your pantry, and to keep costs down, focus on whole foods like fruits, meat, and veggies, instead of buying the pricey gluten free substitute items.  If you do actually have Celiac disease that is so far undetected, there can be many months of healing time until symptoms get better.  So give it a good while before you decide whether or not a gluten-free diet or wheat free diet is working for you.  For ideas of what to eat, check out this thread where we share what we make for dinner:   https://www.celiac.com/forums/topic/75238-the-whats-for-dinner-tonight-chat/

More people will be in when morning comes with some other great input for you.  Feel free to ask any specific questions you may have.

So, it looks like you only had one test, which was negative.  Before going on a gluten-free or Wheat free diet, I strongly suggest getting more testing and perhaps a visit to a gastrointestinal specialist who can do an upper endoscopy to look further into the tummy issues and take biopsies.  Here is a list (From a lovely fellow moderator) that you can take to your doctor to make sure your testing is thorough:

I found a post on reddit where a person had written them asking what was gluten-free and they got a very nondescript answer.  I am going to write them with some specific questions about whether they test, etc to see if I can get some better info.  I would love a cheaper option for frozen dinners, but am hesitant to jump in with these.

That's interesting that the Celiac test was on the border.  Most of the time Celiac is like a pregnancy test- either positive or negative.  But it can be inconclusive sometimes.  If you have, or can get a copy of your test results and post them here, we can give some input on it.  Many doctors do not follow the proper diagnostic criteria for Celiac disease and misdiagnose it.  We can double check that isn't the case for you.

Welcome to the forum, Martina!

How did your doctor come about the diagnosis of wheat sensitivity?  If you haven't been formally tested for Celiac disease, you may want to get tested for that before going on a wheat free diet.  A lot of people that have to avoid wheat only will eat gluten-free foods, but sometimes there can be more to it, especially in the case of a bona fide wheat allergy.  If your problem is only wheat, that is a less restrictive diet than gluten.  But they can be mixed up with each other often.

In general, foods that are not processed and have one ingredient are going to be the easiest to determine if they are wheat-free.  Fruits, Veggies, Meat, and Dairy (things on the outside of the grocery store) are going to be your go-to foods until you can settle into label reading to see if there is wheat in a product.  A lot of the members here are from the U.S., so keep that in mind when you see information on a product.  We have a good number of great members from Canada, as well, so hopefully they can be of help with the labeling laws there.  Meanwhile, feel free to read around the forum.  This site has been around for ten years, so pay attention to the date things are posted since product information can get out of date.  And check out our newbie 101 thread for people newly on a gluten-free diet: 

https://www.celiac.com/forums/topic/91878-newbie-info-101/

It aired with that part removed.  I told my husband about it and he got more riled up than I did.  He said "Why don't they change it to going without radiation for cancer? Same thing!"  lol

My cat's coat is really sleek and shiny too!

My cat is still the dirty scruffball she has always been... LOL

But on the Royal Canin RX food she doesn't get bladder issues anymore so I am glad for her and my pocketbook

I read that they are just taking that snippet about gluten out of the commercial, I guess we will see tomorrow.  It doesn't bother me too much since it wanes in comparison to other things like the joy behar incident, but if all the other advocate groups can make a big deal out of things in commercials and get them pulled, then we should too.  LOL.  

....Maybe I'll fork over the money for the biopsy.  Our wonderful insurance will make me pay $900 so it's kind of a bite.  I suppose I could look at it like a cancer check.  I think I "see blood" in my stool so I can go ahead and get my age 50 colonoscopy at the same time.  .....

If you look at the big picture, 900 dollars is a small price to pay for something that can potentially save your life.  If it is something that is possible to scrounge up, do it.  Healthcare is one area you don't want to go cheap with.  Also, if the whole procedure is going to fall within your deductible, some medical offices and hospitals will negotiate on medical bills.  900 is a little small for that, but it doesn't hurt to ask.  It can range from payment plans to taking some off ie, paying 850 now and just calling it even.  

University of Chicago Celiac Disease Center gives a Open Original Shared Link of Celiac disease in someone who has a first degree relative with it.  However, if you both passed the gene onto a child, the chance is going to be higher. The first step for the kids is to get the genetic test done to see if they have had the Celiac gene passed on, and then annual antibody screening for the ones who have a gene for it.  With it seemingly so prevalent in the family, I would ask their doctor to do a full genetic and antibody screening so you can get it done with one blood draw to see where everyone is.

Most grocery store guacamoles are going to come with a warning about CC when asked.  You just have to ask some questions about where it is prepared.  Texas must be a guacamole loving place, because our grocery store has a little area in the produce section just for guac and their fresh squeezed juices, so no CC going on there.  If it were made in the bakery area or with lots of things in the Deli, buyer beware.  Guacamole isn't too hard to make yourself, but I buy it premade because once you buy all of the ingredients they don't seem to balance out unless you make a huge quantity.  Lots of the packaged ones made by different companies available in the refrigerated section are gluten-free, but they just aren't as good as fresh made.

Hubby reminded me of the appointment that we were both required to attend before they would release me from hospital (granted it was several decades ago). During it, the nutritionist actually suggested that if I needed to "drop a few pounds", I could eat gluten for a week. Many of her clients used that "trick" to lose weight. And I should consider myself "lucky" to have such an easy way to lose weight.

 

Maybe that should be in a "Horror Stories" type category.

What..... the......  whatt.......  wow. Wow.  Definitely a horror story.

I've been hungry for bacon wrapped little smokies smothered in bbq sauce.  Believe me, that is NOTHING that I would've ever wanted before celiac diagnosis.  Is it even possible?   Do they make those little sausages that are gluten free?   

Yes those hillshire farms little smokies that arlene linked are gluten-free!  I will get those and make pigs in a blanket with them, using the King Arthur Flour gluten-free biscuit recipe.  I am sure wrapped in bacon is totally delicious as well!! Now I want sausages in bacon.  May have to pick some up, LOL

I'm planning on skipping SB and going to the gym instead. That removes the problem of what to serve.

Yes, the opposite of what I am going to do... fatten myself up.  LOL