Any Thoughts On These Blood Results?

[Kim27]

I went to a follow up with my GI today and received some to say the least ShoCKING news. When I was diagnosed last March my TTG levels were either 168 or 186, I can't remember but it was def one of those numbers. 5 weeks later gluten-free, it had dropped to 65 and then to 23 in September. I assumed they were going to be normal by the time I had my next 6 months follow up (today). She told me that they came back abnormal at >300 (0-19 normal). WHAT!!!! How is that even possible? I have been very strict with gluten-free and never once knowingly ate any gluten. They were dropping quickly and then suddenly they shoot back up?! I was devastated b/c this diet is so restrictive (especially socially) and such a hassle but I was doing it. Now my levels are >300???? How does that happen.

I have also been gaining weight like crazy for what I feel is no reason. I have gained 25 lbs in about 6 months. I exercise 3-4 days a week, and have cut down on food intake (even tho it wasn't bad before) and I am still gaining weight. I have seen no change from the exercise or food changes. I thought it might be my thyroid, but that came back normal on this test.

All my labs were normal except for my TTG & also, my IGG was low (the range was 600- to something and I was 500some) I didn't get a copy and can't exactly remember. My IGA was normal. I asked her about that and she said not to worry about it, some people are lower. She would only be concerned with the IGA level.

She said one of 2 things, 1: gluten is sneaking in somewhere and I don't know it 2: Refractory Celiac. She's retesting my blood in a month and in the mean time wants me to not eat at restaurants and go back to basic foods that have no chance of having gluten to see if they drop. If not, I have to have another endoscopy and possibly start steroids (which would cause even MORE weight gain)

I just don't even know what to do , I'm so upset. Can anyone make sense of it for me? Why would my TTG shoot back up to higher than it was when I started this ordeal?? And does the low IGG have any significance?? What about drastic weight gain not due to food or thyroid?

Any ideas??

Please!

Thanks

[txplowgirl]

I am assuming you are eating a lot of gluten free products? Even though they are gluten free they still have some amount of gluten in them. Sounds like may be a cummulative effect. They are high in carbs and sugars also. Hence gaining weight.

I'm sure other posters will have some other ideas about what could cause high numbers. Good luck.

[ravenwoodglass]

Have you checked all meds and supplements for gluten? Generic scripts should be checked with each refill as they can change binders at will. Watch out for barley and wheat grass in supplements as they can still carry a gluten free label. Your doctor is giving you good advice about staying out of restaurants for now, where do you usually go? Are you telling them your gluten free or just ordering stuff that looks like it would be safe? The restaurant needs to take precautions to prevent CC. If you are using topicals, makeup or shampoos that have gluten in them drop them for now. Are you sharing a home with gluten eaters? If so are you being careful not to share condiments or bake with flour? You may also want to avoid gluten grain alcohols even if distilled.

[Tigercat17]

Hi Kim,

Have you been getting your blood work done at the same lab? It's really important to stick to the same one since labs have a different kits for testing the TTG. It just seems abnormally high that I wonder if it's just an error... maybe? I actually had a false negative the second time I had my TTG tested. I went to a different lab that time. It was 3 and I felt absolutely horrible. I heard that you can have both false negatives and positives. These tests aren't completely 100% accurate. It's good that your doctor will be testing you again next month. But with that being said, if you're not feeling well, it really could mean you are getting gluten somewhere. I really would just go completely on a whole food diet like you planned and start rechecking everything just like everyone else suggested.

Also, are you keeping a food journal? If so, I would go back to see if you started any new vitamins or any other prescription right after your bloodwork was low. For it to be that high it sounds like it has to be something your taking everyday. I still keep all of my old journals. They can be a huge help with all the detective work.

I also had my TTG go up after being gluten free for a year. It was starting to go down, but then it went from 40 to 60. I was getting my bloodwork checked every three months. I went back to the whole food diet and I wasn't getting better, so I finally found out it was my "gluten free" vitamins. I wasn't feeling so bad either, just a little sore throat from some mild acid reflex and a tender tummy, but just that little amount of gluten was still keeping my antibodies high. I was really surprised my TTG was up again. I also found out that I can't eat a lot of processed gluten free foods, also, so I had to take them out of my diet. But now I do feel so much better. I hope you will, too!

Just take a deep breath, put your thinking cap on and do some detective work. I'm sure you'll found out what's really going on.

Good Luck!

[Kim27]

I am assuming you are eating a lot of gluten free products? Even though they are gluten free they still have some amount of gluten in them. Sounds like may be a cummulative effect. They are high in carbs and sugars also. Hence gaining weight.

I'm sure other posters will have some other ideas about what could cause high numbers. Good luck.

The normal gluten-free products I eat are UDI's sandwich bread, Van's gluten-free waffles, and gluten-free cereals. I don't eat a whole lot of cookies, pretzels, gluten-free treats I just don't like to eat a lot of stuff like that.

At first I did attribute the first 10-15 lbs of weight gain to the new gluten-free products with more carbs, sugar, and fat b/c I previous to diagnosis I always bought low fat stuff but then had to switch to the higher sugar,fat, carbs b/c of the gluten-free. However, I cut back on those things, ate less in general, and went back to the gym. It has been 2 months of that and I've lost a fluctuating 3-5 lbs and that's it!

[Kim27]

Have you checked all meds and supplements for gluten? Generic scripts should be checked with each refill as they can change binders at will. Watch out for barley and wheat grass in supplements as they can still carry a gluten free label. Your doctor is giving you good advice about staying out of restaurants for now, where do you usually go? Are you telling them your gluten free or just ordering stuff that looks like it would be safe? The restaurant needs to take precautions to prevent CC. If you are using topicals, makeup or shampoos that have gluten in them drop them for now. Are you sharing a home with gluten eaters? If so are you being careful not to share condiments or bake with flour? You may also want to avoid gluten grain alcohols even if distilled.

I have checked all meds and vitamins. I check everything food, meds, cosmetics, beauty products. Unless something in the meds has changed, I don't see how that could be. 2 months ago I tried out the GNC VITA PAK-ENERGY for a month(it said gluten-free on the box). Due to the price, I then found a similar VITA PAK at COSTCO, much cheaper, same ingredients, and it also says gluten-free on the box.

I only eat at restaurants that have gluten-free menus and seem to have a plan for CC. I always tell them specifically that I'm ordering from the gluten-free menu and do they do anything special in the kitchen for CC. Except for one time, I've never felt horribly sick after eating out.

I live with a roommate but we keep everything separate. I have my own pots and pans, my own plasticware, they aren't washed together with roomie's dishes. I constantly wipe down the countertops with disenfectant. I have my own toaster. I have my own margarine, jelly, etc. We use squeeze mayo and ketchup.

I don't drink alcohol except the occasional Redbridge.

I seriously don't know what it would be. Thanks for your help

[Kim27]

Hi Kim,

Have you been getting your blood work done at the same lab? It's really important to stick to the same one since labs have a different kits for testing the TTG. It just seems abnormally high that I wonder if it's just an error... maybe? I actually had a false negative the second time I had my TTG tested. I went to a different lab that time. It was 3 and I felt absolutely horrible. I heard that you can have both false negatives and positives. These tests aren't completely 100% accurate. It's good that your doctor will be testing you again next month. But with that being said, if you're not feeling well, it really could mean you are getting gluten somewhere. I really would just go completely on a whole food diet like you planned and start rechecking everything just like everyone else suggested.

Also, are you keeping a food journal? If so, I would go back to see if you started any new vitamins or any other prescription right after your bloodwork was low. For it to be that high it sounds like it has to be something your taking everyday. I still keep all of my old journals. They can be a huge help with all the detective work.

I also had my TTG go up after being gluten free for a year. It was starting to go down, but then it went from 40 to 60. I was getting my bloodwork checked every three months. I went back to the whole food diet and I wasn't getting better, so I finally found out it was my "gluten free" vitamins. I wasn't feeling so bad either, just a little sore throat from some mild acid reflex and a tender tummy, but just that little amount of gluten was still keeping my antibodies high. I was really surprised my TTG was up again. I also found out that I can't eat a lot of processed gluten free foods, also, so I had to take them out of my diet. But now I do feel so much better. I hope you will, too!

Just take a deep breath, put your thinking cap on and do some detective work. I'm sure you'll found out what's really going on.

Good Luck!

During the appointment I never thought to ask if it could've been lab error. I 've been thinking about that a lot and considering calling on Monday to see what they say about the possibility of error and maybe redoing it again to see how it comes out. I'm pretty sure it's the same lab b/c I have a university HMO and they do their own labs in house at the university hospital and outpatient clinics.

What did you mean by your "gluten free" vitamins??? Did they say gluten free but ended up not being or you thought they were gluten-free but ended up not being? I did start some new vitamins 2 months ago but they say gluten-free on the box. I am curious about that.

[cyberprof]

My vote is one of the following:

1) lab error (the first thing I thought of)

2) too much gluten-free treats. If they all have a small level of gluten, eating too much processed food can add up to a gluten concentration that is too high, thus causing symptoms such as weight gain.

3) thyroid or other problems causing weight gain

You should let us know later if you get it figured out.

[ravenwoodglass]

What did you mean by your "gluten free" vitamins??? Did they say gluten free but ended up not being or you thought they were gluten-free but ended up not being? I did start some new vitamins 2 months ago but they say gluten-free on the box. I am curious about that.

Some vitamins will be labeled gluten free but have wheat or barley grass in the ingredients. Those are not safe for us. You need to read all the ingredients not just look for the gluten free label unfortunately.

[Tigercat17]

During the appointment I never thought to ask if it could've been lab error. I 've been thinking about that a lot and considering calling on Monday to see what they say about the possibility of error and maybe redoing it again to see how it comes out. I'm pretty sure it's the same lab b/c I have a university HMO and they do their own labs in house at the university hospital and outpatient clinics.

What did you mean by your "gluten free" vitamins??? Did they say gluten free but ended up not being or you thought they were gluten-free but ended up not being? I did start some new vitamins 2 months ago but they say gluten-free on the box. I am curious about that.

Hi Kim,

Just like ravenwoodglass said, yes I think there was some barley grass in my vitamins or just cross contamination of gluten. They can add barley grass in vitamins and still call them gluten free. And they said Gluten Free right on the bottle, too. My reactions were mild, but I knew I really didn't feel 100% either. And I even called these companies a few times, but they kept telling me they were gluten free and they tested for gluten. But they also told me they had gluten in the facility, also.

Vitamins can be tricky and since it's something you're taking everyday, it's really important they are completely gluten free with no chance of cross contamination and that they test for gluten. Now when I call companies (especially about vitamins and medicines) I always ask if the they are made on the same lines with any gluten and if there is any gluten in the facility where they are processed.

It's really nice when a company doesn't have any gluten in the facility at all and they test for gluten. That's the kind of company that you really want to go with.

It might be a good idea to get retested or at least call your doctor to get some more answers. That's good that you're going to the same place for all your celiac testing, so at least you know they are testing with the same kit.

You also might want to cut down on your gluten free processed foods like the waffles and the cereals and stick with more naturally gluten free foods. A lot of these products aren't completely free of gluten either. Some could have 20 ppm of gluten in each of them and if your eating 3 of these products daily, you could be getting 60 ppm of gluten a day. I think us celiacs can tolerate about 20 ppm a day, but some us can't even tolerate that amount. This could explain why your levels are high also. And the good thing is your diet will be a lot healthier and you'll loose the weight you want to without even trying.

I hope you get some answers and feel better soon! Keep us posted!

[Tigercat17]

I have checked all meds and vitamins. I check everything food, meds, cosmetics, beauty products. Unless something in the meds has changed, I don't see how that could be. 2 months ago I tried out the GNC VITA PAK-ENERGY for a month(it said gluten-free on the box). Due to the price, I then found a similar VITA PAK at COSTCO, much cheaper, same ingredients, and it also says gluten-free on the box.

I only eat at restaurants that have gluten-free menus and seem to have a plan for CC. I always tell them specifically that I'm ordering from the gluten-free menu and do they do anything special in the kitchen for CC. Except for one time, I've never felt horribly sick after eating out.

I live with a roommate but we keep everything separate. I have my own pots and pans, my own plasticware, they aren't washed together with roomie's dishes. I constantly wipe down the countertops with disenfectant. I have my own toaster. I have my own margarine, jelly, etc. We use squeeze mayo and ketchup.

I don't drink alcohol except the occasional Redbridge.

I seriously don't know what it would be. Thanks for your help

Just a thought... did you check your disinfectant? I used to use one before going gluten free, but now I just used a clean wash clothe with dawn detergent, since I know it's gluten free. I just thought of this when I went to make some breakfast for myself this morning.

[Kim27]

I checked my vitamins and I don't see wheat or barley listed directly on there. Could they be under a different name or does it normally directly say barley or wheat grass??

I checked the manufacturer of a generic prescrip and it's the same one I've always had that I've called about and it's made from corn.

I'm looking forward to Monday so I can call her and see if maybe she'll retest it now and see if it was error.

I hope it's error b/c this stuff is hard to figure out!

[Kim27]

Just a thought... did you check your disinfectant? I used to use one before going gluten free, but now I just used a clean wash clothe with dawn detergent, since I know it's gluten free. I just thought of this when I went to make some breakfast for myself this morning.

I just checked it and I don't see anything weird. Just chemical type cleaner ingredidents. They are Kirkland (Costco) type like Lysol wipes. I have been using these for years, so I don't think it's that b/c then my levels wouldn't have dropped it in the first place as I continued to use them. Thanks for the suggestion!

[Kim27]

Hi everybody thanks for your help!

I got my blood rechecked and it came back the same, >300

Pretty worried. Worried b/c I have checked everything and have found NO gluten culprits hiding.

Could someone please tell me to look for in the vitamins? I'm hoping it's something like that! I checked my vitamins and I don't see wheat or barley listed directly on there. Could they be under a different name or does it normally directly say barley or wheat grass??

[Tigercat17]

Hi everybody thanks for your help!

I got my blood rechecked and it came back the same, >300

Pretty worried. Worried b/c I have checked everything and have found NO gluten culprits hiding.

Could someone please tell me to look for in the vitamins? I'm hoping it's something like that! I checked my vitamins and I don't see wheat or barley listed directly on there. Could they be under a different name or does it normally directly say barley or wheat grass??

Sorry to hear the bad news, Kim. That was nice that your doctor ordered the bloodwork for you again.

As for the vitamins, some companies may not list the barley grass in the ingredients and it may have it in them anyway or they might just be made on shared lines and getting cross containments. I would call the company again and ask these questions. If you think it might be your vitamins, you could just stop taking them for a week or two and see if you feel any different. Also, I would keep a food journal of everything -food, medicine, vitamins and your symptoms.

I think it might be a good idea to stop eating the Van waffles. I think they are made on shared lines. You really might just be super sensitive and might not be able to eat anything on shared lines. This is true for me also. The gluten free cereals might be cross containment, too. This was my weakness, too.. I had to give up a lot of the cold gluten free cereals. The only ones I can eat our the Glutino apple and cinnamon and Gltuino honey and nut - but only once a week. On the other days, I eat eggs, Ponoc Buckwheat cereal, Ancient Harvest Quinoa or warm brown rice with milk and fresh fruit.

I'm sure all together we'll all be able to help you figure this out. It has to be something. Just to show you how we could miss something, yesterday I found out my mouthwash had traces of gluten in it. I almost fell out of the chair! I found out by accident calling on the Crest 3D vivid toothpaste. They told me all of crests toothpastes are gluten free, but two of their mouthwash's aren't gluten free. I was shocked! I thought all of Crest's products were gluten free, but I was wrong- it's only their toothpastes. It's like just when you think you know it all - you don't. So, I would just go through all of you make-up, hair products, medicine, vitamins and food and just make a list and check off as you go. It sounds like something you changed or added in the last 6 months. I'm sure you'll find it.

Also, you didn't say, but is your kitchen gluten free? If not, this could be the problem. I have a completely gluten free kitchen. I know there's no way I could have done it any other way and feel this good. The last time I had gluten in my home - a birthday cake for my hubby -I got so sick. It took me a month to get better. There was cake icing on everything -my ice cream, paper plates, plastic wrap, aluminum foil. I had to give it all away...

Hopefully some else will add to this too! Take care and keep us posted if you find anything out.

[Luddie]

........... How is that even possible? I have been very strict with gluten-free and never once knowingly ate any gluten. They were dropping quickly and then suddenly they shoot back up?!......... Now my levels are >300???? How does that happen.

I have also been gaining weight like crazy for what I feel is no reason. I have gained 25 lbs in about 6 months. I exercise 3-4 days a week, and have cut down on food intake (even tho it wasn't bad before) and I am still gaining weight. I have seen no change from the exercise or food changes. I thought it might be my thyroid, but that came back normal on this test.

All my labs were normal except for my TTG & also, my IGG was low (the range was 600- to something and I was 500some) I didn't get a copy and can't exactly remember. My IGA was normal. I asked her about that and she said not to worry about it, some people are lower. She would only be concerned with the IGA level.

She said one of 2 things, 1: gluten is sneaking in somewhere and I don't know it 2: Refractory Celiac. She's retesting my blood in a month and in the mean time wants me to not eat at restaurants and go back to basic foods that have no chance of having gluten to see if they drop. If not, I have to have another endoscopy and possibly start steroids (which would cause even MORE weight gain)

I just don't even know what to do , I'm so upset. Can anyone make sense of it for me? Why would my TTG shoot back up to higher than it was when I started this ordeal?? And does the low IGG have any significance?? What about drastic weight gain not due to food or thyroid?

Any ideas??

Please!

Thanks

First of all, you are definitely not alone in this.

I was eating some gluten free stuff and found out that I must be sensitive to some grains normally thought to be okay, so I have gone completely grain free just to be sure. I take b vitamin complex to make up for some of what's missing) and the comments made about gaining weight from the excess carbs in gluten free foods are probably pretty true although it might just be your body trying to cope and which will change once things get settled down.

One thing I'd suggest is that whenever you have any blood work done you make sure to get a copy and keep all of them in a loose leaf notebook so you can easily check things. You'll be glad later that you have such a history to refer to. Right at first that might not seem important, but it is. Keep a journal of your foods eaten and your moods and anything else that seems significant. This will be a great help when trying to figure out and discuss the situation with your doctor. Keep a page of your notebook titled "questions for my next appointment" and jot things down as you think of them. When your next appt rolls around, you'll have it ready to go.

Another thing, if you did go grain free I'm sure you'd lose weight. And perhaps it's not a good idea to be exercising just yet while you're trying to get your body healed. Walking maybe to keep yourself moving but heavy duty workouts probably aren't a great idea.

[Kim27]

Sorry to hear the bad news, Kim. That was nice that your doctor ordered the bloodwork for you again.

As for the vitamins, some companies may not list the barley grass in the ingredients and it may have it in them anyway or they might just be made on shared lines and getting cross containments. I would call the company again and ask these questions. If you think it might be your vitamins, you could just stop taking them for a week or two and see if you feel any different. Also, I would keep a food journal of everything -food, medicine, vitamins and your symptoms.

I think it might be a good idea to stop eating the Van waffles. I think they are made on shared lines. You really might just be super sensitive and might not be able to eat anything on shared lines. This is true for me also. The gluten free cereals might be cross containment, too. This was my weakness, too.. I had to give up a lot of the cold gluten free cereals. The only ones I can eat our the Glutino apple and cinnamon and Gltuino honey and nut - but only once a week. On the other days, I eat eggs, Ponoc Buckwheat cereal, Ancient Harvest Quinoa or warm brown rice with milk and fresh fruit.

I'm sure all together we'll all be able to help you figure this out. It has to be something. Just to show you how we could miss something, yesterday I found out my mouthwash had traces of gluten in it. I almost fell out of the chair! I found out by accident calling on the Crest 3D vivid toothpaste. They told me all of crests toothpastes are gluten free, but two of their mouthwash's aren't gluten free. I was shocked! I thought all of Crest's products were gluten free, but I was wrong- it's only their toothpastes. It's like just when you think you know it all - you don't. So, I would just go through all of you make-up, hair products, medicine, vitamins and food and just make a list and check off as you go. It sounds like something you changed or added in the last 6 months. I'm sure you'll find it.

Also, you didn't say, but is your kitchen gluten free? If not, this could be the problem. I have a completely gluten free kitchen. I know there's no way I could have done it any other way and feel this good. The last time I had gluten in my home - a birthday cake for my hubby -I got so sick. It took me a month to get better. There was cake icing on everything -my ice cream, paper plates, plastic wrap, aluminum foil. I had to give it all away...

Hopefully some else will add to this too! Take care and keep us posted if you find anything out.

I double checked with my vitamin company and they said they definitely are gluten-free. Nothing hidden. I've still stopped taking them, just in case, for the next month.

Per my doctor's instructions, I'm not eating out for a month. Eating only whole, natural foods. I'm eating veggies, fruits, rice, eggs, and meats with no additives. I'm not adding sauces or spices to things. I might eat a little olive oil on things. I'm not supposed to eat any gluten-free products, packaged foods, etc. She's going to retest me mid-April and see where it goes from there. I've been eating this way for about a week.

I had some problems with stomach pains before, but nothing major. Certainly not enough problems to think my tTG is >300. I'm hoping I'm one of those sensitive people to traces of gluten with the whole <20PPM thing, and I still react to that and that she doesn't have to mention Refractory again. We'll see.

Does anyone have experience with antibodies reacting to the gluten-free foods, but not to the Certified gluten-free foods ( that have <10PPM or generally undetectable levels of gluten) ??? I'm thinking maybe I need to eat those and not the general gluten-free foods after this ordeal is over?

I've double checked and rechecked so many things and still have found anything with outright gluten in it.

We'll see.

Thanks so much for your help, you're very kind.

[Kim27]

First of all, you are definitely not alone in this.

I was eating some gluten free stuff and found out that I must be sensitive to some grains normally thought to be okay, so I have gone completely grain free just to be sure. I take b vitamin complex to make up for some of what's missing) and the comments made about gaining weight from the excess carbs in gluten free foods are probably pretty true although it might just be your body trying to cope and which will change once things get settled down.

One thing I'd suggest is that whenever you have any blood work done you make sure to get a copy and keep all of them in a loose leaf notebook so you can easily check things. You'll be glad later that you have such a history to refer to. Right at first that might not seem important, but it is. Keep a journal of your foods eaten and your moods and anything else that seems significant. This will be a great help when trying to figure out and discuss the situation with your doctor. Keep a page of your notebook titled "questions for my next appointment" and jot things down as you think of them. When your next appt rolls around, you'll have it ready to go.

Another thing, if you did go grain free I'm sure you'd lose weight. And perhaps it's not a good idea to be exercising just yet while you're trying to get your body healed. Walking maybe to keep yourself moving but heavy duty workouts probably aren't a great idea.

Thanks for your advice! I'm glad to know that I'm not alone but it's still frustrating (the weight gain and the tTG level!) I am keeping a food diary. It's an online one that makes it quite easy. Also easy to see calories, carbs, sugar, etc.

The exercising doesn't seem to make me feel bad or anything. It actually makes me feel better, no pain or anything. I guess I should talk to the doc to see if I'm damaging something?

Thanks for your help