Need Help Understanding Follow-Up Bloodwork Results

[BrookeT]

Hello,

I need some help understanding my follow-up celiac blood panel results.

At diagnosis, about a year and a half ago, my TTG igg was 53.7. It is now 13.7. My TTG iga was 222.5 and is now 22.

My question is, is it a good thing that my numbers have come down quite a bit, or is it bad that they are not negative by now?

I follow a very strict diet, but eat out occasionally. (I am very careful where I eat out and ask lots of questions, but you know how that goes. ) So, I am not sure if my numbers are still not negative from possible gluten in restaurants or if it just hasn't been enough time. Also, does anyone know if SIBO can cause slightly elevated bloodwork numbers? I think I may also have SIBO.

Any insight would be appreciated.

[Takala]

Keep up the good work, and go by how you feel and react to what you eat.

[Skylark]

Your numbers have fallen a lot. It's a good thing!

[BrookeT]

Your numbers have fallen a lot. It's a good thing!

Thanks. I am still having some continued digestive issues, however many other things have resolved. My doctor thinks my continued symptoms could be due to IBS, SIBO (small intestinal bacterial overgrowth), or refractory celiac. He wants to do a follow-up endoscopy to see if my intestines are healing.

[Skylark]

A year and a half is not necessarily long enough to heal from severe villous atrophy. Give it time. It can take as long as five years to fully recover on endoscopy, and the median in one study was almost two years. Have a look at these articles.

Open Original Shared Link

Open Original Shared Link

[BrookeT]

A year and a half is not necessarily long enough to heal from severe villous atrophy. Give it time. It can take as long as five years to fully recover on endoscopy, and the median in one study was almost two years. Have a look at these articles.

Open Original Shared Link

Open Original Shared Link

That's good to know. I will check the articles out. Thanks!

[BrookeT]

A year and a half is not necessarily long enough to heal from severe villous atrophy. Give it time. It can take as long as five years to fully recover on endoscopy, and the median in one study was almost two years. Have a look at these articles.

Open Original Shared Link

Open Original Shared Link

How long should it take for the follow-up blood panel results to normalize? It's been a little over a year and a half for me and although my numbers have come down quite a bit, they are still not in the normal range. I am extremely cautious with my diet & products that I use, so I'm not sure if it's from cross-contamination at restaurants or that I may have refractory celiac. I have had some definite improvements in symptoms but I have had ongoing digestive issues that have not resolved. It could also be SIBO &/or IBS-D. I just don't know. I am so frustrated & don't understand why my blood panel has not normalized yet. My doc wants to do a follow-up endoscopy but I am not sure if I should wait until the 2 year mark or have it done now.

[Skylark]

We have had board members who had TTG stay positive because of other autoimmune diseases. Is your Dr. monitoring only TTG or one of the celiac-specific tests like DGP or anti-EMA? Do you have another autoimmune disease like Hashimoto's thyroiditis or type 1 diabetes?

There are also people with celiac who do not recover while they are eating so-called gluten-free products. There are traces of gluten in most grain-based products, just below the 20ppm or 10ppm the particular company designates gluten-free. It's not enough gluten to bother most people with celiac disease but some people are more sensitive to trace gluten and won't recover.

A fair number of people with celiac react to oats. I hope you are not eating them.

I would shift to a truly gluten-free diet of meat, vegetables, fruit, nuts, and eggs and eliminate casein, soy, and all grains before I accepted a diagnosis of refractory celiac. When I eat that way my digestive system works much better. IBS is sometimes helped by the specific carbohydrate diet, which is grain-free, starch-free, sugar-free. Open Original Shared Link

[BrookeT]

Keep up the good work, and go by how you feel and react to what you eat.

Thanks. I am just frustrated as it's been around 20 months and I still have some digestive issues. I had hoped my blood test numbers would have been in the normal range by now so that I could attribute my ongoing symptoms to IBS or SIBO.

[BrookeT]

We have had board members who had TTG stay positive because of other autoimmune diseases. Is your Dr. monitoring only TTG or one of the celiac-specific tests like DGP or anti-EMA? Do you have another autoimmune disease like Hashimoto's thyroiditis or type 1 diabetes?

There are also people with celiac who do not recover while they are eating so-called gluten-free products. There are traces of gluten in most grain-based products, just below the 20ppm or 10ppm the particular company designates gluten-free. It's not enough gluten to bother most people with celiac disease but some people are more sensitive to trace gluten and won't recover.

A fair number of people with celiac react to oats. I hope you are not eating them.

I would shift to a truly gluten-free diet of meat, vegetables, fruit, nuts, and eggs and eliminate casein, soy, and all grains before I accepted a diagnosis of refractory celiac. When I eat that way my digestive system works much better. IBS is sometimes helped by the specific carbohydrate diet, which is grain-free, starch-free, sugar-free. Open Original Shared Link

I don't have any other auto-immune disease. My doctor did the TTG igg/iga and the endomysial IGA. (The endomysial came back normal.) So, I am not really sure how to interpret that.

Also, I haven't had oats since being diagnosed. I am considering trying the SCD diet though. Although, it sounds so restrictive.

[Skylark]

If I were you I'd go another six months eating a diet where there could not possibly be gluten before I looked for another endoscopy. As I mentioned, so-called gluten-free breads often contain unavoidable traces of gluten, maybe 5 ppm. You may not tolerate that much and do you want a refractory celiac diagnosis and steroids becasue you didn't get your diet clean enough? That would be awful!

Other places to look are pet foods that are around your house, gluten in cosmetics and hair care products, or exposure to gluten at work.

SCD sounds hard but once you get used to it the veggies and fruit are really tasty! Besides, it's not like gluten-free. A little rice or a square of Dove chocolate won't kill ya'. If it helps, you listen to your body and see what you tolerate. I'm doing a food chemical intolerance elimination diet right now for migraines and I hate how bloated and tired I'm feeling right now eating a bunch of low-salicylate rice and gluten-free bread. I can't wait to hopefully expand my diet again and get back to mostly-SCD. Almond flour and coconut flour baked goods are really easy to make and I think they are moister and better-tasting than the starch-based stuff.

[Skylark]

Those two references I linked above are the best information I can give you. I'm not a doctor. Both have full text available for free so you can read them and draw your own conclusions. As I said before, the median time to mucosal recovery from severe celiac is two years and it can take as long as five.

[amoliphant]

I would like to ask a similar question; I have followed a strict gluten free diet 2 years in June. My IgA total is 148, range being 66-436 mg/dl. My Anti IgA Antibodies came in at 0.2; ref. range being 0.0-7.0.

My question is--shouldn't my antibodies register as zero if I were doing really well with my diet? and...is 148 for my IgA Total a good thing or not so good?

Thank you all for your help!

[Skylark]

I don't understand your "Anti IgA". What does the lab slip say? It should be anti-something and it's probably a celiac test that is down to the normal range. Total IgA should be normal, not zero. It just means your immune system is functioning properly. What did your doctor tell you?

[amoliphant]

I don't understand your "Anti IgA". What does the lab slip say? It should be anti-something and it's probably a celiac test that is down to the normal range. Total IgA should be normal, not zero. It just means your immune system is functioning properly. What did your doctor tell you?

My lab slip says "Celiac Disease Profile, IgA total 148 Units mg/dL Ref Range 66-436

under that; "Anti TTG IgA Antibodies 0.2 Unit/mL Ref: 0.0-7.0

My doctor just had the nurse call and say "it's negative" with no further explanation. Thanks for your help, I appreciate it.

[Skylark]

You're welcome. It's negative and great news. The normal TTG means the diet is working your celiac antibodies are gone.

[amoliphant]

You're welcome. It's negative and great news. The normal TTG means the diet is working your celiac antibodies are gone.

So does it mean I'm as "good" as I can be? Can I improve? What about the 0.2? Why is it not 0.0? Does that mean I'm getting hidden gluten somewhere? I'm not having any symptoms but my original symptoms were mostly what I call "underground" as in anemia, chronic diarrhea, depression, & some nutrient deficiencies. Thanks again.

[Skylark]

So does it mean I'm as "good" as I can be? Can I improve? What about the 0.2? Why is it not 0.0? Does that mean I'm getting hidden gluten somewhere? I'm not having any symptoms but my original symptoms were mostly what I call "underground" as in anemia, chronic diarrhea, depression, & some nutrient deficiencies. Thanks again.

No, it cannot improve. You're fine, really. This kind of test always has some background noise that keeps it from being 0, which is why the normal range allows up to 0.7.

[amoliphant]

No, it cannot improve. You're fine, really. This kind of test always has some background noise that keeps it from being 0, which is why the normal range allows up to 0.7.

Thank you for your help!

[Takala]

I don't have any other auto-immune disease. My doctor did the TTG igg/iga and the endomysial IGA. (The endomysial came back normal.) So, I am not really sure how to interpret that.

Also, I haven't had oats since being diagnosed. I am considering trying the SCD diet though. Although, it sounds so restrictive.

If you do try the SCD diet and respond well, you may then eventually heal up enough that you can reintroduce some other gluten free foods with starch, again. Such as brown rice, gluten-free beans, etc. As long as you don't go crazy overboard with it. (and I am speaking from experience, not as a hypothetical or theory.) Also, keep in mind that some of the SCD diets out there are a bit "eccentric" and can be tweaked to be compatible with your own needs. I've seen (outdated) lists of what can and can not be eaten on the SCD, which did not really have a coherent, consistent logic. This is partially due to the writer's own reactions, but also because manufacturers change the way they process foods constantly, and what was safe 5 years or 5 weeks ago may be badly cross contaminated now, plus it's different in Europe compared to North America.

I know that I have had to write off a lot of things that I was eating in 2003 because these processed food manufacturers just aren't keeping a consistent label of ingredients and are putting in cheap fillers and starches. Sometimes they then change it again after a few months- and it doesn't have it. They also may be running their gluten free foods thru lines that previously processed gluten bearing items. They can do what they want, I can't control their philosophy towards their customers, the only time I get annoyed is when the label does change, showing it now has an added starch, or a different factory is making their foods and the plant does wheat, and my reactions are dismissed as anecdote because supposedly all allergens must be disclosed - yeah, but all gluten does not have to be disclosed, neither does barley, rye, etc.

[Skylark]

yeah, but all gluten does not have to be disclosed, neither does barley, rye, etc.

In the US wheat in all forms must be disclosed and major manufacturers are also disclosing barley and rye. I don't understand why you would write this? I do see a lot of recalls of food that is mislabeled and contains an allergen on the FDA website. Is that what you're talking about? Or are you so sensitive that CC from wheat lines running in the same warehouse gets you? I'd hate that!

I feel best on SCD-ish but my gut is in good enough shape that I can look at the lists as "legal" = eat this food all you like and "illegal" = have a small amount of one of these foods no more than a couple times a week. It works very well for me.

[BrookeT]

In the US wheat in all forms must be disclosed and major manufacturers are also disclosing barley and rye. I don't understand why you would write this? I do see a lot of recalls of food that is mislabeled and contains an allergen on the FDA website. Is that what you're talking about? Or are you so sensitive that CC from wheat lines running in the same warehouse gets you? I'd hate that!

I feel best on SCD-ish but my gut is in good enough shape that I can look at the lists as "legal" = eat this food all you like and "illegal" = have a small amount of one of these foods no more than a couple times a week. It works very well for me.

So, is the Breaking the Vicious Cycle SC diet still the best one to follow?

[Skylark]

So, is the best SC diet to do, still the Breaking the Vicious Cycle one?

People get good results with both Elaine Gottschall's SCD and Natasha Campbell-McBride's GAPS. What I'd suggest is starting out on SCD because it's not as restrictive. You can use the idea of having sauerkraut from GAPS if it appeals more than the SCD yogurt.

If you still have lingering digestive problems on SCD, GAPS has a gut-healing plan that temporarily reduces your diet to meat and vegetable stew made in bone broth. It tends to eliminate many allergens and the stew is easy to digest and heals an inflamed gut. You gradually add foods back as you heal until you're pretty much eating SCD. (There are a few instances where McBride's lists differ but they are pretty minor.) You may not need to worry with GAPS so I'd suggest it as a backup plan.

[BrookeT]

People get good results with both Elaine Gottschall's SCD and Natasha Campbell-McBride's GAPS. What I'd suggest is starting out on SCD because it's not as restrictive. You can use the idea of having sauerkraut from GAPS if it appeals more than the SCD yogurt.

If you still have lingering digestive problems on SCD, GAPS has a gut-healing plan that temporarily reduces your diet to meat and vegetable stew made in bone broth. It tends to eliminate many allergens and the stew is easy to digest and heals an inflamed gut. You gradually add foods back as you heal until you're pretty much eating SCD. (There are a few instances where McBride's lists differ but they are pretty minor.) You may not need to worry with GAPS so I'd suggest it as a backup plan.

Great advice! Thanks. : )

[BrookeT]

People get good results with both Elaine Gottschall's SCD and Natasha Campbell-McBride's GAPS. What I'd suggest is starting out on SCD because it's not as restrictive. You can use the idea of having sauerkraut from GAPS if it appeals more than the SCD yogurt.

If you still have lingering digestive problems on SCD, GAPS has a gut-healing plan that temporarily reduces your diet to meat and vegetable stew made in bone broth. It tends to eliminate many allergens and the stew is easy to digest and heals an inflamed gut. You gradually add foods back as you heal until you're pretty much eating SCD. (There are a few instances where McBride's lists differ but they are pretty minor.) You may not need to worry with GAPS so I'd suggest it as a backup plan.

I guess I will need to get both books and research them. I definitely don't want to have to mess with getting a yogurt maker & making the yogurt, so maybe I will go the sauerkraut route. Is that something you just buy already prepared?

Do you know how long it should take to know whether or not the diet is working? Thanks!