Positive & Increasing TTG -- questions re: testing & history

[winjer]

I'm a 31-year-old high school teacher (currently on disability) who has been dealing with 4 years of major gastrointestinal problems, which resulted in major surgery for a rectal prolapse & redundant colon last August, prior to which I had lost about 20 pounds. The source of all my gas, bloating, distention & diarrhea has remained basically unexplained though ("lets trust the surgery resolves your obstructed defecation and in turn your gas... d'oh it made both  worse"  ) , and my symptoms have only gotten significantly more severe since surgery. I'm facing a permanent ostomy. I've also, for the first time in a lonnng time, been eating a lot of gluten every day... primarily out of depression and (misguided?) attempts to gain weight and keep stool soft.

I've been typically slightly underweight for 10+ years. Suffered anorexia for a period 10 years ago, and since recovering have "naturally" maintained a low weight and low-wheat lifestyle (I've always been put off by heavy wheat items like bread, sandwiches & pasta, *shrug*). As a child I had crazy severe & unexplained constipation issues. I've also had strong teeth discoloration & marked enamel defects (& two missing adult teeth(?)) since childhood. Depression & anxiety have been longterm issues. I have osteoperosis, which was perviously explained by me being anorexic from 19-22.

Everything changed 4 years ago upon the onset of all my (severe) classic-IBS symptoms (gas/bloat/d+c). On a low-gluten diet, TTG bloodwork came back "low-positive" repeatedly. A biopsy showed no damage, but my gluten intake at the time was limited to 2 cookies a day, or occasionally 2 cookies and a piece of pizza. Would this have been enough to show damage? I trialled going gluten-free for a few months, and didn't find a ton of relief... so assumed I was just FODMAP intolerant... however I was eating lots of oats and lactose that whole time, which I have subsequently identified as major triggers... not to mention just lots of gluten-free junk food. Wheat was obviously a significant gas trigger since this hit, but that seems typical for gut illness in general.

Since my major surgery and the continuation and worsening of symptoms, I've connected with an internist who has again and again pushed me towards eating wheat as a method towards weight gain and healthy non-anxious eating. I also found that a high-wheat diet would provide the proper consistency (i.e. very loose diarrhea every day) to allow colorectal function (the surgery I had went very poorly and caused major obstructed defecation). I have not had success gaining weight, and have found my digestive system feeling assaulted like never before 24/7 by bloating, gas and discomfort, despite a relatively low-residue diet and constant elimination. My appetite has never ever been worse.

I just had a fourth TTG test, and after this high-gluten diet I am now testing POSITIVE as opposed to BORDERLINE.

Questions:

1) I suspect my first biopsy's gluten challenge wasn't quite heavy enough in terms of gluten content (couple cookies a day). Thoughts?

2) Could being underweight alone cause an elevated TTG? How about simply having colorectal surgery? "IBS" or the supposedly non-pathogenic gut bacteria blastocystis hominis which I've been diagnosed with? I haven't been diagnosed with any other autoimmune condition, and I'm so confused. So far everyones just shoving the TTG off on IBS/anorexia, which doesn't make sense to me at all.

3) I really don't know what to do right now. I'm 20 pounds underweight, in digestive hell, with most of my medical support still suspecting I'm merely acting anorexic. I most assuredly am not. They want to put me on a tube. I would really like to get off the gluten in order to ease my system and gain weight, as I'm clearly reacting to it and have been deluding myself for the past year trying to recover from this surgery, but I'd also *REALLY* like some diagnostic confirmation so my doctors & family all stop looking at me like I'm crazy, and that so I can act with appropriate caution/freedom in my dietary future.

4) Do my childhood experiences line up with any celiac sufferers? I've heard about enamel defects, but missing teeth or crazy constipation? Obviously osteoperosis could connect, and doesn't *really* line up with my anorexia considering I was already fully grown.

5) Is there any way to get EMA/HLA blood tests done in Canada (BC)??? It's really frustrating that my only chance for any confirmation is waiting months and months here for another biopsy, especially considering how dire the need to improve my digestion is ASAP. I imagine if I could get an EMA test & it came back positive I would just take that as my confirmation and be able to move on with confidence here.

6) Is it common for celiac sufferers to find themselves reacting to FODMAPS and/or histamines in foods while they're  still maintaining a gluten-filled diet? Gluten definitely isn't my *only* trigger right now, and that's probably a primary reason I haven't been led to eliminate it at.

Sorry for all the talk & questions, but I'm in an incredibly challenging place right now, my head is just swimming and swimming, and any thoughts would be greatly appreciated!

 

Bloodwork

Current, after six months of a heavy-gluten diet = Tissue Transglutaminase Ab IgA ---18.0 ---- <12.0 U/mL = normal
POSITIVE -Probable celiac disease but this should be confirmed with a small bowel biopsy. [Tested by a multiplex flow immunoassay
(BioPlex) method.] 

6 months ago = Tissue Transglutaminase Ab IgA ---13.0 ---- <12.0 U/mL = normal
BORDERLINE - Borderline anti-tTG. Suggest repeat if clinically indicated.Consider the possibility of celiac disease - a small bowel biopsy may be required. [Tested by a multiplex flow immunoassay
(BioPlex) method.]

2012, prior to negative biopsy = Tissue Transglutaminase Ab IgA ---24.0 ---- <20.0 RU/mL = normal
Weak positive anti-TTG. Consider the possibility of celiac disease - a small bowel biopsy may be required.

 

[cyclinglady]

Winter!

I am sorry that your posting was overlooked!  Thanksgiving holidays here in the States made things pretty slow.  I am getting a kid off to school but will respond later.  

I think you have celiac disease.   I understand the long wait times in Canada for a GI and I bet that only they can run a full celiac panel (I tested postive barely yet had moderate to severe intestinal damage.    Many of our Canadian members just get diagnosed by their GP based on only the blood test for that reason even with just the TTg.  A positive is a positive!  

Got to go....lunches to make.

Hugs!  You can get better!  

[winjer]

Thanks a ton for taking the time cylclinglady!

...do any Canadian (or better, BC) members know about what testing is available in this province? (My GP ordered an EMA to follow up, but the lab here only performs TTG and simply replaced the EMA with another TTG... sigh.)

[cyclinglady]

Sorry, , in my haste to get my kid to school I forgot that the Electric Company shut down our power for line repair today.  Spent the day at the Mall ?

I would create another posting and in the title reach out to fellow Canadians.  It will get you a faster response.  Our NVSMOM is a terrific source but she is homeschooling and coaching and I can imagine she is super busy. She does check in very often.  

I will answer some of your questions (kid is at Water Polo practice).  

Yep, I have other intolerances and watching out for histamine load is one of them.  I get rashes and tummy aches thanks to a glutening in July.  Got another issue, but what is one more?  I am getting better though and I suspect that I am finally healing.  Took me three months to recover from that glutening.  Ugh!  ?   A food and symptom diary can be very helpful.  

The TTG test is pretty specific to celiac disease.  Experts say 95% of Celiacs are caught with the TTG.    New  research shows it might just be 70%.  

I bet a few months on a gluten-free diet rich in fats, protein and healthy carbs (veggies and fruit) will help heal your gut and you will finally gain weight.  How can you gain weight with a damaged gut?  What are the doctors thinking?  Read up on cross contamination.  Eat simple unprocessed foods.  Do not get glutened!  Do not eat out until you have gained weight.  Eat well-cooked foods (even fruit) in the beginning.  Nuts and raw foods are hard to digest. You can eat those later.  When I was glutened, I could not eat peanuts, so I ate Peanutbutter. No tummy aches!  ?

IBS stands for "I be stumped"!  It is hard to get away from a label.  There is something wrong and it is most likely celiac disease based on what you submitted.  It will be up to you to decide on what action to take, but if I was as sick as you........

 

 

[squirmingitch]

I agree with all cyclinglady has said. Here's a link to the Newbie 101 where you can learn how to keep yourself safely eating gluten free. Follow the links contained in the thread. Note this thread is rules for the US & Canada has some different rules on some things but the "guts" of the thread is applicable for anywhere.

You've been through hell & your doctors have their heads up their behinds. How blind are they that they can not see you have celiac disease???? The tests are right in front of their faces! Like cyclinglady said, how can you gain weight when your guts are damaged & you're suffering from malabsorption? They are stuck on the fact that you had anorexia & they can't see anything beyond that. They have labeled you & that's all there is to it. It's awful!!!!!!

(((((((((((((((((HUGS)))))))))))))))))))))

[winjer]

Thank you *SO MUCH* you two. I really really appreciate it. I'll take the advice & make another post about Canadian testing.

[winjer]

Wondering if anyone else has thoughts on my case here?

I'm still basically being led to accept the celiac diagnosis based on *SOLELY* elevated TTG, without a biopsy.

3 months gluten free and I feel worse digestively, if anything. Any change has been very minor. I don't know how long I can commit to patience+GFD (especially with people saying sometimes 2 years to heal) if in fact this is a false-positive result and there is something else severely wrong with my intestines that is driving my TTG false-positive. I can't afford to waste more time; I've been so sick, mysteriously, for so long, and it is just becoming too much to bear...

This recent paper goes into the challenge of interpreting TTG results, describing how common false-positives can truly be. Open Original Shared Link -- though I'm very confused -- many on this site seem to say "THERE IS NO FALSE POSITIVE", but a lot of the literature seems to argue otherwise. 

[Gemini]

30 minutes ago, winjer said:

Wondering if anyone else has thoughts on my case here?

I'm still basically being led to accept the celiac diagnosis based on *SOLELY* elevated TTG, without a biopsy.

3 months gluten free and I feel worse digestively, if anything. Any change has been very minor. I don't know how long I can commit to patience+GFD (especially with people saying sometimes 2 years to heal) if in fact this is a false-positive result and there is something else severely wrong with my intestines that is driving my TTG false-positive. I can't afford to waste more time; I've been so sick, mysteriously, for so long, and it is just becoming too much to bear...

This recent paper goes into the challenge of interpreting TTG results, describing how common false-positives can truly be. Open Original Shared Link -- though I'm very confused -- many on this site seem to say "THERE IS NO FALSE POSITIVE", but a lot of the literature seems to argue otherwise. 

As other autoimmune diseases can elevate tTg slightly or produce low titers, you can have a false positive caused by another autoimmune disease, such as autoimmune liver disease, thyroid disease or Type 1 diabetes.  If you have something along those lines going on, it might cause a false positive. If you don't and do suspect Celiac, then the positive might not be false.

Your symptom list in your first post all are red flags for Celiac Disease.  If you need an official diagnosis, then the only recourse would be to indulge in a gluten filled diet again and re-test or go to a private doctor and pay cash for the full panel.  Insurance is becoming as frustrating here in the States as it is in Canada, so I understand your annoyance. What I would suggest to you if you follow a strict gluten-free diet is to add digestive enzymes and probiotics into the mix.  These 2 items are highly suggested for someone new to the diet or for those who have weight issues as a Celiac.....which would be me also. I have gained 20 pounds since diagnosis 11 years ago and feel great but still use a lower dose digestive enzyme and probiotics because I just feel better when I use them. I still do not gain weight easily, even though I am healed. I think that no matter how well a person with Celiac heals, they still can't digest food as well as someone without it. You also have additional, serious conditions of the digestive tract so every little thing you do to help with digestion should be looked at.

[RMJ]

Celiac antibody tests are immunoassays.  They use antibodies to detect antibodies.  I am a scientist and used to develop this type of assay.  They are NOT perfect.  Even those approved by the FDA (or Canadian equivalent) can give false positives and false negatives.  However, MOST positives and negatives are real.  

I looked up the FDA information on the Bioplex assay (type indicated in your lab results).  They occasionally got false positives from Crohns and rheumatoid arthritis, about one in 20 patients with those disorders came up positive. 

One thing that might help you determine if your positives are real or not - after being carefully gluten free for at least six months, see if your antibody levels go down significantly.  This would not be meaningful if your diet is being contaminated with gluten (which perhaps it is if you're not feeling any better)?  So if levels don't go down it could be either that you had a false positive, or gluten contamination.

I hope you find answers.

Ruth

[cyclinglady]

All the advice given has been excellent.  I think that three months is not enough time to see huge improvements considering that 1) you were very sick and underweight, 2) had other intestinal issues, 3) and the gluten-free diet has a very steep learning curve.  Chances are you have other intolerances too, like so many of us.  You can try to identify those with a food diary where you should be tracking calories as well. What are you eating on a daily basis?  Have you considered consulting with a celiac-knowledgeable dietician?  I agree that cross contamination may be an issue.  I also agree that taking enzymes can be helpful until you can make those on your own.   Probiotics can be useful.  Just make sure everything is gluten free.  Focus your research on eating the best gluten-free foods that will expedite healing.  

You have already been gluten-free for three months.  Another three should not be difficult to do.  What am I saying?  Most of us on the forum are gluten-free and have to be for the rest of our lives!  It can be done!  Then ask  for another TTg test to see if your antibodies are down.  

I think you are just discouraged.  Waiting to get well is hard.  I get that! 

 

[winjer]

22 hours ago, Gemini said:

 What I would suggest to you if you follow a strict gluten-free diet is to add digestive enzymes and probiotics into the mix.  These 2 items are highly suggested for someone new to the diet or for those who have weight issues as a Celiac.....which would be me also. I have gained 20 pounds since diagnosis 11 years ago and feel great but still use a lower dose digestive enzyme and probiotics because I just feel better when I use them. I still do not gain weight easily, even though I am healed. I think that no matter how well a person with Celiac heals, they still can't digest food as well as someone without it. You also have additional, serious conditions of the digestive tract so every little thing you do to help with digestion should be looked at.

Thanks a ton. I've been meaning to pick up digestive enzymes. Most probiotics I've found myself unable to tolerate, with worsening GI symptoms... though admittedly I probably haven't stuck it through with one for long enough. Do you have a brand or strain in particular that you found helpful?

19 hours ago, RMJ said:

Celiac antibody tests are immunoassays.  They use antibodies to detect antibodies.  I am a scientist and used to develop this type of assay.  They are NOT perfect.  Even those approved by the FDA (or Canadian equivalent) can give false positives and false negatives.  However, MOST positives and negatives are real.  

I looked up the FDA information on the Bioplex assay (type indicated in your lab results).  They occasionally got false positives from Crohns and rheumatoid arthritis, about one in 20 patients with those disorders came up positive. 

One thing that might help you determine if your positives are real or not - after being carefully gluten free for at least six months, see if your antibody levels go down significantly.  This would not be meaningful if your diet is being contaminated with gluten (which perhaps it is if you're not feeling any better)?  So if levels don't go down it could be either that you had a false positive, or gluten contamination.

I hope you find answers.

Ruth

Great info Ruth, thanks so much. I figured antibodies would still decrease on a GFD regardless of the root cause of said antibodies, but am I mistaken? Is the TTG found not being produced in response to wheat in these other patients? I have not been diagnosed with another autoimmune condition, but a big part of my current worries surround the potential of one continuing to go undiagnosed while I struggle with patience+GFD.

 

16 hours ago, cyclinglady said:

All the advice given has been excellent.  I think that three months is not enough time to see huge improvements considering that 1) you were very sick and underweight, 2) had other intestinal issues, 3) and the gluten-free diet has a very steep learning curve.  Chances are you have other intolerances too, like so many of us.  You can try to identify those with a food diary where you should be tracking calories as well. What are you eating on a daily basis?  Have you considered consulting with a celiac-knowledgeable dietician?  I agree that cross contamination may be an issue.  I also agree that taking enzymes can be helpful until you can make those on your own.   Probiotics can be useful.  Just make sure everything is gluten free.  Focus your research on eating the best gluten-free foods that will expedite healing.  

You have already been gluten-free for three months.  Another three should not be difficult to do.  What am I saying?  Most of us on the forum are gluten-free and have to be for the rest of our lives!  It can be done!  Then ask  for another TTg test to see if your antibodies are down.  

I think you are just discouraged.  Waiting to get well is hard.  I get that! 

 

Thanks a ton cyclinglady. I'm being pushed by my medical support & nutritionist to "eat everything besides gluten" & to "eat for pleasure, eat what you enjoy, eat lots," but I worry their understanding of celiac disease isn't so great. It's a good excuse to eat some Gluten Free junk food, but I'm generally trying to do whole foods as much as possible. It's challenging because I really don't deal with fiber well because of a previous ugly colorectal surgery. I figure I need to trial cutting out dairy here soon at least, then the plan is to attempt 2-week eliminations each of corn, soy, eggs, nuts etc. to see what effect that as. I am definitely trying my best to play it safe & focus on rice & rice flours, low-fodmap fruits, nut butters, olive/coconut oil, butter, etc. Certainly eating too much sugar, but not a ridiculous amount, and my underweight body is pretty addicted/reliant on some.

It has certainly become a process of becoming more aware/paranoid of the potential for gluten cross-contamination. I've been slowly moving towards consuming certified gluten-free products now, but it really does limit my choices. Now this morning I'm worried about my coffee beans... sigh!

I'm gaining weight pretty steadily since going gluten free (it has eased the psychological challenge of choosing what to eat, but really my GI symptoms feel worse), so I may be able to do a full-on SCD or Whole 30 or low-carb paleo diet soon. I've been pushed away from those for now, to see how I can do gaining weight & feeling better on just gluten-free, but I think the time might be nearing to be much more rigid about my diet. I've also been scared of the challenge, so it's been easy to be "pushed away" from what I really know I should do. I would, of course, stay on top of counting calories to ensure I keep maintaining/gaining, should I start one of those diets.

Thanks for everyone who took the time to reply! Any other thoughts would be great. Still struggling to accept everything with what I've read about TTG :/... eager for some scopes before too long to rule out IBD at least (though I've never really dealt with blood).

[RMJ]

Winjer, I don't think one can assume that positive TTG results in a non-celiac are a response to wheat.  I haven't seen any scientific literature on the subject, that's just my educated guess.