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Ttg Normal But Symptoms Are Relentless?

TTNOGluten

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TTNOGluten Explorer
TTNOGluten
Posted

I had made a previous post but did not seem to get any responses, so I will throw this out there again. I have been gluten free for 4 1/2 months now after my diagnosis with 3 EGD's yes 3 of them, and labs revealing an elevated TTG Iga, and Igg, as well as demiadated gliadin.

Now since returning to Mayo clinic in Mid november I had my TTg Iga rechecked, and had it again done two weeks ago, and it is undetectable. I have been very compliant with diet and no that this test is used to assess compliance. The doc's cannot seem to understand though why I still have god aweful symptoms of chronic daily abdominal aching, like a deep epigastric nauseating ache, nausea, as well as back pain.

Why if I have done the diet, been compliant, and had normal labs, do I still feel aweful??

I asked the doctor if he felt I have refractory celiac?? can you have refractory celiac and your labs be normal, I don't know? I am in total desperation mode now, willing to try virtually anything.

Please anyone with insight on this, I would greatly appreciate it

thanks in advance

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Jestgar Rising Star
Jestgar
Posted

Have you tried eliminating other foods?

pricklypear1971 Community Regular
pricklypear1971
Posted

Well, have you tried eliminating other common allergens - milk, soy, corn, eggs, etc.?

A problem with one of those wouldn't raise Ttg (at least I don't think so - someone else chime in) but could make you quite ill.

maximoo Enthusiast
maximoo
Posted

have you been chkd for any female problems? ovarian cysts, etc?

TTNOGluten Explorer
TTNOGluten
Posted
  • Author

The female problems are out, seeing as I am a 41 y/o guy, but damn some days I am so bloated I feel like I could be pregnant. Lol! I have tried to eliminate milk protein, I did that for awhile, but no real change, even though I had some allergy testing revealing a milk protein allergy, which is so bizarre to me, because prior to the abrupt onset of this 5 months ago, I could eat/drink anything with absolutely no belly issues what-so-ever. Then bango, overnight symptoms came on starting August 9th, like a light switch. Interestingly this started after I had been sick with strep throat and had taken some Abx. Also no real improvement with probiotics either, other than gas?? I don't know, I am lost and scared, and tired of being in pain everyday.

Jestgar Rising Star
Jestgar
Posted

Ok, so you're not pregnant.....good to rule that one out. :P

What do you eat? Mostly packaged? Or mostly made from scratch?

My wild guess is that the abx disrupted your normal intestinal flora. Consider stripping down to meat and veggies for a few weeks, and being consistent with the probiotics to see if you can return your body to normal.

pricklypear1971 Community Regular
pricklypear1971
Posted

Have you considered a diet like GAPS?

I haven't tried it but many here have, especially if they are experiencing unexplained chronic issues, and are in pain.

It appears to let you heal your leaky gut (which many Celiacs suffer from) and slowly introduce foods so you can gauge if you have other intolerances.

I tell ya what, if I start going down the "unexplained" route, I'll do it. From what I've seen here, you might as well go whole-hog and figure it out rather than piddle around with eliminating various foods. That's just my 0.02 - and since I've never tried GAPS who knows....

I did do an 8 month milk and soy elimination after my son was born. I HATED IT. Then again any first-time, postpartum mother, pumping (son wouldn't bf), trying to eliminate milk & soy would probably be a little peeved. Ok, I was nuts.... I guess what I learned was I'd like a plan of how to test foods, and a guide of what TO EAT. GAPS does that.

There are a few things about it I think are questionable after reading the author's website, but I think I could ignore it and try it because people with unexplained gut issues do get positive results from it.

Sorry, I'm rambling.

Point is, you're in pain, looks like you're avoiding gluten successfully - unfortunately another food issue is likely.

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TTNOGluten Explorer
TTNOGluten
Posted
  • Author

I do try to stay clear of most processed foods, occasionally they sneak in, if I have to travel someplace etc.. I think I have the hardest time with consistency of this, I will go for 4-5 days, and then certain things creep back in as far as processed foods etc. I do eat Udi's gluten free bread, take in alot of fruit, vegatables and meats. I stick with almond breeze milk and water, maybe have one gin and tonic a month, the only place I cheat periodically is with Kozy shack pudding which I love, but it does contain milk?? Seems like I am so damn hungry when I am on this stripped down meat veggie diet, that I almost can't eat enough. I have dropped 28 lbs since the start of August.

Gemini Experienced
Gemini
Posted

I had made a previous post but did not seem to get any responses, so I will throw this out there again. I have been gluten free for 4 1/2 months now after my diagnosis with 3 EGD's yes 3 of them, and labs revealing an elevated TTG Iga, and Igg, as well as demiadated gliadin.

Now since returning to Mayo clinic in Mid november I had my TTg Iga rechecked, and had it again done two weeks ago, and it is undetectable. I have been very compliant with diet and no that this test is used to assess compliance. The doc's cannot seem to understand though why I still have god aweful symptoms of chronic daily abdominal aching, like a deep epigastric nauseating ache, nausea, as well as back pain.

Why if I have done the diet, been compliant, and had normal labs, do I still feel aweful??

I asked the doctor if he felt I have refractory celiac?? can you have refractory celiac and your labs be normal, I don't know? I am in total desperation mode now, willing to try virtually anything.

Please anyone with insight on this, I would greatly appreciate it

thanks in advance

If I am understanding your post correctly, they repeated the tTg test for compliance? That is not the correct test to run for compliance for the gluten-free diet.

That measures intestinal damage only and not whether you are ingesting gluten. The demeadiated gliadin test would be the one to run to see if you are ingesting gluten. Doctors make this mistake all the time.

It sounds like you have a secondary intolerance going on, possibly dairy, which can cause the same symptoms or you may need a digestive enzyme to take with meals to aid in digestion. Some Celiacs can have compromised pancreatic activity and don't produce enough enzymes to digest food completely. That will cause gut pain. Most doctors do not even look for this. Have you been tested for any other digestive diseases?

maximoo Enthusiast
maximoo
Posted

Sorry dude I thought you were a dudette. :ph34r:

Best wishes for improved health!

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    • Aretaeus Cappadocia
      Gluten free nuts

      By Aretaeus Cappadocia · Posted

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    • trents
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By trents · Posted

      Thanks for the thoughtful reply and links, Wheatwacked. Definitely some food for thought. However, I would point out that your linked articles refer to gliadin in human breast milk, not cow's milk. And although it might seem reasonable to conclude it would work the same way in cows, that is not necessarily the case. Studies seem to indicate otherwise. Studies also indicate the amount of gliadin in human breast milk is miniscule and unlikely to cause reactions:  https://www.glutenfreewatchdog.org/news/gluten-peptides-in-human-breast-milk-implications-for-cows-milk/ I would also point out that Dr. Peter Osborne's doctorate is in chiropractic medicine, though he also has studied and, I believe, holds some sort of certifications in nutritional science. To put it plainly, he is considered by many qualified medical and nutritional professionals to be on the fringe of quackery. But he has a dedicated and rabid following, nonetheless.
    • Scott Adams
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By Scott Adams · Posted

      I'd be very cautious about accepting these claims without robust evidence. The hypothesis requires a chain of biologically unlikely events: Gluten/gliadin survives the cow's rumen and entire digestive system intact. It is then absorbed whole into the cow's bloodstream. It bypasses the cow's immune system and liver. It is then secreted, still intact and immunogenic, into the milk. The cow's digestive system is designed to break down proteins, not transfer them whole into milk. This is not a recognized pathway in veterinary science. The provided backup shifts from cow's milk to human breastmilk, which is a classic bait-and-switch. While the transfer of food proteins in human breastmilk is a valid area of study, it doesn't validate the initial claim about commercial dairy. The use of a Dr. Osborne video is a major red flag. His entire platform is based on the idea that all grains are toxic, a view that far exceeds the established science on Celiac Disease and non-celiac gluten sensitivity. Extraordinary claims require extraordinary evidence, and a YouTube video from a known ideological source is not that evidence."  
    • Wheatwacked
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By Wheatwacked · Posted

      Some backup to my statement about gluten and milk. Some background.  When my son was born in 1976 he was colicky from the beginning.  When he transitioned to formula it got really bad.  That's when we found the only pediactric gastroenterologist (in a population of 6 million that dealt with Celiac Disease (and he only had 14 patients with celiac disease), who dianosed by biopsy and started him on Nutramegen.  Recovery was quick. The portion of gluten that passes through to breastmilk is called gliadin. It is the component of gluten that causes celiac disease or gluten intolerance. What are the Effects of Gluten in Breastmilk? Gliaden, a component of gluten which is typically responsible for the intestinal reaction of gluten, DOES pass through breast milk.  This is because gliaden (as one of many food proteins) passes through the lining of your small intestine into your blood. Can gluten transmit through breast milk?  
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