New Potential Diagnosis

[k-cope]

Hi all! 

My PCP recently ordered a celiac panel and everything has come back elevated/positive (specifics below). Interestingly, I don't have many symptoms (only iron deficiency, fatigue, and reflux). The gastroenterologist I was referred to is booked out for a while, so I won't be seen for 2 months, but am wondering what a typical new diagnosis experience is like. 

TTG - 145 (IgA), 43 (IgG)

DPG - 125 (IgA), 78 (IgG)

EMA - 1:160 (IgA)

I've seen that the gold standard for diagnosing celiac is an intestinal biopsy, but I'm wondering if anyone has experienced diagnosis without biopsy? I really would rather not have one (as I'm sure everyone feels!), and am wondering what the chances are that that could happen. 

I'm also looking for gluten free recommendations for when it's time to make the switch. I'm specifically looking for bread recommendations; I don't have time to bake my own gluten free, so would need something I could pick up in store. I also live in middle Tennessee, so any recommendations for local restaurants would be amazing! 

I'm of course nervous about this new journey, and welcome any other tips, recommendations, suggestions, or insights! -Kelli

[trents]

Welcome to the forum, Kelli!

For us to be able to say much about your celiac serum antibody test numbers we would also need to see the reference ranges for negative vs. positive. Different labs use different reference ranges. There is not an industry standard. Can you post that info? But my guess is yours represent strong positives. Yes, when the numbers are high, some physicians will declare you to have celiac disease without pursuing a biopsy, particularly in the UK where it is common to do so if the numbers are 10x normal range or greater. In the USA it is still more common for physicians to order a biopsy regardless of the antibody numbers. 

Whatever you do, don't start eating gluten free until all testing is done or you will invalidate the results. Continue to eat regular amounts of gluten unless your physician decides to forego the biopsy.

You'll get a lot of different opinions on what is the best gluten-free bread, depending on what people are looking for in bread and what is available in the area where they live. Personally, I like Franz gluten-free bread products the best but I think it's a brand only available on the west coast USA.

Restaurants and eating out pose the biggest single risk for those with celiac disease. Even when you order something that is gluten free by the nature of what it is, there is still a very large chance it will be cross contaminated with gluten because of cooking and handling practices in the kitchen. Will those gluten free spaghetti noodles be cooked in the same pot they just used to cook wheat noodles? Will that burger without the bun be cooked on the same grill as the wheat bread cheese sandwich or will the bacon be cooked on the same grill as someone else's French toast. Are the sauces and seasonings they use on that steak gluten-free? Part the answer to this question is how sensitive you are to minor amounts of gluten, which by the way, will likely change over time as you begin to eliminate gluten from your diet. Eating gluten-free tends to lower the threshold of tolerance over time. Also, just because you don't experience symptoms to small amounts of gluten doesn't necessarily equate to no damage being done to the villi of your small bowel.

In general, genuine Mexican food restaurants use corn instead of a lot of wheat. So, that's something to consider. Also, Chinese restaurants can be an option if you stay away from fried wanton and fried rice and anything with soy sauce. Choose menu items that use white sauce instead of soy sauce and choose steamed rice instead of fried rice. Work with the waitress/waiter and ask questions when you go to order. You must advocate for yourself when eating out and learn to stuff your self-consciousness in doing so. Understand that I am not saying that Mexican and Chinese are necessarily going to be free of CC (cross contamination) risks but if you must eat out these might be safer choices. Also, Subway is a good choice because they offer gluten-free buns and their staff will even toast the bun on a paper towel so it doesn't come in contact with the toaster grill. Subway staff seem to have been well-trained in this regard. They will also change gloves before they handle your food if you ask them.

There is a real learning curve involved in consistently eating gluten-free. It's not only food you have to be worried about but also meds and supplements. Here is a primer to get you started: 

 

[Scott Adams]

As for the different breads, this topic might be helpful. Costco carries packs of 2 frozen gluten-free pizzas that are good, as well as 2 packs of gluten-free loaves of bread (Franz), and Trader Joe's carries lots of GF products that are good, including hamburger buns. This thread might be helpful:

 

[k-cope]

23 hours ago, trents said:

Welcome to the forum, Kelli!

For us to be able to say much about your celiac serum antibody test numbers we would also need to see the reference ranges for negative vs. positive. Different labs use different reference ranges. There is not an industry standard. Can you post that info? But my guess is yours represent strong positives. Yes, when the numbers are high, some physicians will declare you to have celiac disease without pursuing a biopsy, particularly in the UK where it is common to do so if the numbers are 10x normal range or greater. In the USA it is still more common for physicians to order a biopsy regardless of the antibody numbers. 

Whatever you do, don't start eating gluten free until all testing is done or you will invalidate the results. Continue to eat regular amounts of gluten unless your physician decides to forego the biopsy.

You'll get a lot of different opinions on what is the best gluten-free bread, depending on what people are looking for in bread and what is available in the area where they live. Personally, I like Franz gluten-free bread products the best but I think it's a brand only available on the west coast USA.

Restaurants and eating out pose the biggest single risk for those with celiac disease. Even when you order something that is gluten free by the nature of what it is, there is still a very large chance it will be cross contaminated with gluten because of cooking and handling practices in the kitchen. Will those gluten free spaghetti noodles be cooked in the same pot they just used to cook wheat noodles? Will that burger without the bun be cooked on the same grill as the wheat bread cheese sandwich or will the bacon be cooked on the same grill as someone else's French toast. Are the sauces and seasonings they use on that steak gluten-free? Part the answer to this question is how sensitive you are to minor amounts of gluten, which by the way, will likely change over time as you begin to eliminate gluten from your diet. Eating gluten-free tends to lower the threshold of tolerance over time. Also, just because you don't experience symptoms to small amounts of gluten doesn't necessarily equate to no damage being done to the villi of your small bowel.

In general, genuine Mexican food restaurants use corn instead of a lot of wheat. So, that's something to consider. Also, Chinese restaurants can be an option if you stay away from fried wanton and fried rice and anything with soy sauce. Choose menu items that use white sauce instead of soy sauce and choose steamed rice instead of fried rice. Work with the waitress/waiter and ask questions when you go to order. You must advocate for yourself when eating out and learn to stuff your self-consciousness in doing so. Understand that I am not saying that Mexican and Chinese are necessarily going to be free of CC (cross contamination) risks but if you must eat out these might be safer choices. Also, Subway is a good choice because they offer gluten-free buns and their staff will even toast the bun on a paper towel so it doesn't come in contact with the toaster grill. Subway staff seem to have been well-trained in this regard. They will also change gloves before they handle your food if you ask them.

There is a real learning curve involved in consistently eating gluten-free. It's not only food you have to be worried about but also meds and supplements. Here is a primer to get you started: 

 

Wow, thank you for so much good information! I never realized how much of an issue CC could/would be - thank you for sharing about it, as well a the kinds of conversations to have to attempt to prevent it. Eating out is certainly one of my biggest worries, since I can't exactly look at an ingredient list. 

The beginner's guide you shared is also very helpful!

I included reference ranges for my labs here:

TTG - 145 (IgA), 43 (IgG) [normal for both <19.99]

DPG - 125 (IgA), 78 (IgG) [normal for both <19.99]

EMA - 1:160 (IgA) [normal <1:10]

8 hours ago, Scott Adams said:

As for the different breads, this topic might be helpful. Costco carries packs of 2 frozen gluten-free pizzas that are good, as well as 2 packs of gluten-free loaves of bread (Franz), and Trader Joe's carries lots of gluten-free products that are good, including hamburger buns. This thread might be helpful:

 

This is great, thank you for sharing! I'm glad I'm already a Trader Joe's shopper, I'm sure they will have lots of safe options for me

[trents]

3 hours ago, k_cope said:

Wow, thank you for so much good information! I never realized how much of an issue CC could/would be - thank you for sharing about it, as well a the kinds of conversations to have to attempt to prevent it. Eating out is certainly one of my biggest worries, since I can't exactly look at an ingredient list. 

The beginner's guide you shared is also very helpful!

I included reference ranges for my labs here:

TTG - 145 (IgA), 43 (IgG) [normal for both <19.99]

DPG - 125 (IgA), 78 (IgG) [normal for both <19.99]

EMA - 1:160 (IgA) [normal <1:10]

This is great, thank you for sharing! I'm glad I'm already a Trader Joe's shopper, I'm sure they will have lots of safe options for me

The EMA is the least sensitive antibody test for celiac disease but the most specific. So, there's about 0 chance you don't have celiac disease.

[JD-New to Celiac]

Hi K-Cope - Contrary to my forum name (which I have not yet figured out how to change) I am about two years into this now and let me just say I have hated every minute of it. In response to your biopsy question...I was so very sick and down to about 140lbs (I am a six foot male) when my PCP told me I had Celiac after doing the blood tests, he suggested I come off gluten, which I did right away. It would take several weeks of gluten free living before I could get into the GI office, referred by my PCP, and the first thing the GI said before he even sat down was "You can't diagnose Celiac without a biopsy. So, you need to go back on gluten (for this amount of time) and we will get that procedure scheduled". I told him I would do that as I was so sick before going off gluten completely. He basically then said he could not help me and referred me back to my PCP for follow up. Since then I have struggled to find a PCP that is willing to help me. No GI will help as they do not recognize my condition as having celiac. I am so angry and depressed with all the nonsense. My tTG IgA was 20 times plus the normal limit and my endomysial IgA came back positive and flagged as abnormal. After going off gluten the tTg IgA levels started coming down even though I am still showing exposure although I don't know how that is possible. I've decided now to do the genetic markers, which is the third and final test done in diagnosing celiac in other countries as I understand it. I would imagine it will show genetically I am prone to having this disease. Looking back would I have liked to have known the extent of the damage done to my small intestine? Would I have wanted the GI to say I have "confirmed celiac" based off the biopsy results? I don't know. The procedure comes with a risk and I bleed very easily and do not clot well. I have a heart condition so I don't like to be put under sedation. I have very high blood pressure that is elevated with anxiety. It is a decision that you will have to live with but I am 100% positive I have celiac. I don't care what the GI tells me or any other doctor. Food makes me sick. I know that even without a test. I also learned I am allergic to dairy, eggs, soy, shellfish, fish and oats. I can't tolerate meat either. You may want to get tested for food allergies. Then a year ago I was diagnosed with IBS and now SIBO. My bones have deteriorated, along with my teeth, skin, hair, eyes, and joints. I am fatigued all the time. I attribute many of those to the fact that no one will help me. I truly don't want to alarm you. I just wanted you to be aware of some additional complications to look out for in case you have to go this alone as I have.

[JD-New to Celiac]

Sorry...reading back I meant to say "I told him I would NOT do that as I was so sick before going off gluten completely.

[trents]

34 minutes ago, JD-New to Celiac said:

Sorry...reading back I meant to say "I told him I would NOT do that as I was so sick before going off gluten completely.

At the end of the day it really doesn't matter, does it, if you have an official diagnosis or not? Either way, you now know you must avoid gluten. If you have trouble in the future getting a PCP to order antibody tests so you can check your progress, realize you can order home tests from companies like imaware for around $100 US.

Also, what vitamin and mineral supplements are you taking to address what sounds like medical issues related to nutrient malabsorption?

[JD-New to Celiac]

3 hours ago, trents said:

At the end of the day it really doesn't matter, does it, if you have an official diagnosis or not? Either way, you now know you must avoid gluten. If you have trouble in the future getting a PCP to order antibody tests so you can check your progress, realize you can order home tests from companies like imaware for around $100 US.

Also, what vitamin and mineral supplements are you taking to address what sounds like medical issues related to nutrient malabsorption?

Trents - You are right it does not matter but when the government and insurance companies are involved it does matter. I am sick all the time and my PCP did diagnose me with Celiac even without the biopsy. That allowed me to file for FMLA. Also, with a diagnosis of Celiac, I can use my HSA to pay for items that ordinarily might not be covered under HSA. I suppose those are the only benefits.

In response to what I am taking...I don't have a doctor that will listen, so I've taken the advice from some on this website and from what I can find on the internet. I was recently diagnosed with pulsatile tinnitus so that doctor told me to take co-enzymated Vitamin B complex; and Zinc Gluconate. I then read too much zinc is not good. I was then diagnosed with osteoarthrosis in my ankle, so I read online to take CalDveg that I thought might help the bones. It is algae calcium with magnesium, Vitamins C, D3 and K2-7. I am not sure who told me to take Betaine Hydrochloride but I was taking that. I thought if I took biotin that might help with hair, nails. And, I also have a bottle of potassium citrate. I don't know what that is for.  I also have fluctuating blood pressure (no one knows why), so a friend told me to take moringa powder. I stopped all of these a month ago to get bloodwork done to see if I even need any of them as I am not sure if they are helping.

[JD-New to Celiac]

On 7/31/2022 at 9:02 PM, k_cope said:

Hi all! 

My PCP recently ordered a celiac panel and everything has come back elevated/positive (specifics below). Interestingly, I don't have many symptoms (only iron deficiency, fatigue, and reflux). The gastroenterologist I was referred to is booked out for a while, so I won't be seen for 2 months, but am wondering what a typical new diagnosis experience is like. 

TTG - 145 (IgA), 43 (IgG)

DPG - 125 (IgA), 78 (IgG)

EMA - 1:160 (IgA)

I've seen that the gold standard for diagnosing celiac is an intestinal biopsy, but I'm wondering if anyone has experienced diagnosis without biopsy? I really would rather not have one (as I'm sure everyone feels!), and am wondering what the chances are that that could happen. 

I'm also looking for gluten free recommendations for when it's time to make the switch. I'm specifically looking for bread recommendations; I don't have time to bake my own gluten free, so would need something I could pick up in store. I also live in middle Tennessee, so any recommendations for local restaurants would be amazing! 

I'm of course nervous about this new journey, and welcome any other tips, recommendations, suggestions, or insights! -Kelli

Sorry K-Cope - I went off topic and I wanted to share my go to for a bread option. I have many other allergies besides gluten but found the brand Ener-G bread to be a good option. Until recently I was able to eat the Multigrain Loaf. The weird thing is this bread is vacuum packed and does not need to be frozen. One negative, I have seen online folks that have posted packages with mold but I bought dozens of loaves and I never had a problem. They are online and will ship to you although a little show in shipping. When I was eating this brand I used to buy a larger quantity to avoid paying the shipping charges. It is best toasted and for a gluten free, egg free, dairy free, soy free, option it is not bad. It also doesn't break apart. If you have a Whole Foods near you they also carry a line of gluten free options. I think in partnership with Amazon they even deliver. BTW - I did make bread a few times and it actually came out pretty good!

[Jays911]

On 7/31/2022 at 8:46 PM, trents said:

Welcome to the forum, Kelli!

For us to be able to say much about your celiac serum antibody test numbers we would also need to see the reference ranges for negative vs. positive. Different labs use different reference ranges. There is not an industry standard. Can you post that info? But my guess is yours represent strong positives. Yes, when the numbers are high, some physicians will declare you to have celiac disease without pursuing a biopsy, particularly in the UK where it is common to do so if the numbers are 10x normal range or greater. In the USA it is still more common for physicians to order a biopsy regardless of the antibody numbers. 

Whatever you do, don't start eating gluten free until all testing is done or you will invalidate the results. Continue to eat regular amounts of gluten unless your physician decides to forego the biopsy.

You'll get a lot of different opinions on what is the best gluten-free bread, depending on what people are looking for in bread and what is available in the area where they live. Personally, I like Franz gluten-free bread products the best but I think it's a brand only available on the west coast USA.

Restaurants and eating out pose the biggest single risk for those with celiac disease. Even when you order something that is gluten free by the nature of what it is, there is still a very large chance it will be cross contaminated with gluten because of cooking and handling practices in the kitchen. Will those gluten free spaghetti noodles be cooked in the same pot they just used to cook wheat noodles? Will that burger without the bun be cooked on the same grill as the wheat bread cheese sandwich or will the bacon be cooked on the same grill as someone else's French toast. Are the sauces and seasonings they use on that steak gluten-free? Part the answer to this question is how sensitive you are to minor amounts of gluten, which by the way, will likely change over time as you begin to eliminate gluten from your diet. Eating gluten-free tends to lower the threshold of tolerance over time. Also, just because you don't experience symptoms to small amounts of gluten doesn't necessarily equate to no damage being done to the villi of your small bowel.

In general, genuine Mexican food restaurants use corn instead of a lot of wheat. So, that's something to consider. Also, Chinese restaurants can be an option if you stay away from fried wanton and fried rice and anything with soy sauce. Choose menu items that use white sauce instead of soy sauce and choose steamed rice instead of fried rice. Work with the waitress/waiter and ask questions when you go to order. You must advocate for yourself when eating out and learn to stuff your self-consciousness in doing so. Understand that I am not saying that Mexican and Chinese are necessarily going to be free of CC (cross contamination) risks but if you must eat out these might be safer choices. Also, Subway is a good choice because they offer gluten-free buns and their staff will even toast the bun on a paper towel so it doesn't come in contact with the toaster grill. Subway staff seem to have been well-trained in this regard. They will also change gloves before they handle your food if you ask them.

There is a real learning curve involved in consistently eating gluten-free. It's not only food you have to be worried about but also meds and supplements. Here is a primer to get you started: 

Agree with most of what you said  but I have been told you don’t need to keep eating gluten until the endoscopy, since it searches for existing damage to the villi  also, most Subways I have been to in the US don’t have gluten-free bread  we like Jersey Mike’s and Firehouse.

 

[trents]

The villi in the small bowel will begin to heal if you eliminate gluten before the endoscopy/biopsy. Consider this, the gluten challenge period is only two weeks long for the endoscopy/biopsy where as it is 6-8 weeks long for the antibody test. That tells me the physical damage begins to disappear long before the serum antibodies do. That seems counter intuitive but it is a fact. Depending on how damaged the villi are, they might heal enough to render the endoscopy/biopsy inconclusive if you go gluten free beforehand. Then you would be stuck in this no man's land without firm answers.

Do Jersey Mike and Firehouse offer gluten free sub buns? We live in a small town and don't have those franchises. Just Subway.

[Jays911]

16 minutes ago, trents said:

The villi in the small bowel will begin to heal if you eliminate gluten before the endoscopy/biopsy. Consider this, the gluten challenge period is only two weeks long for the endoscopy/biopsy where as it is 6-8 weeks long for the antibody test. That tells me the physical damage begins to disappear long before the serum antibodies do. That seems counter intuitive but it is a fact. Depending on how damaged the villi are, they might heal enough to render the endoscopy/biopsy inconclusive if you go gluten free beforehand. Then you would be stuck in this no man's land without firm answers.

Do Jersey Mike and Firehouse offer gluten free sub buns? We live in a small town and don't have those franchises. Just Subway.

 

16 minutes ago, trents said:

The villi in the small bowel will begin to heal if you eliminate gluten before the endoscopy/biopsy. Consider this, the gluten challenge period is only two weeks long for the endoscopy/biopsy where as it is 6-8 weeks long for the antibody test. That tells me the physical damage begins to disappear long before the serum antibodies do. That seems counter intuitive but it is a fact. Depending on how damaged the villi are, they might heal enough to render the endoscopy/biopsy inconclusive if you go gluten free beforehand. Then you would be stuck in this no man's land without firm answers.

Do Jersey Mike and Firehouse offer gluten free sub buns? We live in a small town and don't have those franchises. Just Subway.

Understand that the will heal somewhat, but my doc told me I could go gluten-free. Bestdvice, talk to your docs. 
as to restaurants,so many more choices. Do you have Culver’s? Great burgers, and dedicated fryers.  And yes, Jersey Mike’s and Firehouse have gluten-free bread and take it seriously. They formally clean slicers before, and change gloves and use dedicated knives. Progress. 

[trents]

You said: "Understand that the will heal somewhat, but my doc told me I could go gluten-free. Bestdvice, talk to your docs."

It is the common experience of users on this forum that most general practitioners are woefully underinformed about celiac disease and things pertaining to it's diagnosis. 

From the National Celiac Association: 

It is very important that you do not start a gluten-free diet before testing and diagnosis. Once on a gluten-free diet, antibodies to gluten will start to drop in the blood and the intestine will start to heal and there is a risk of a false negative result on both the blood test and endoscopy. https://nationalceliac.org/celiac-disease-questions/diagnosing-celiac-disease-after-going-on-a-gluten-free-diet/