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Calling On All Veteran Celiac Posters

TTNOGluten

By TTNOGluten
in Coping with Celiac Disease

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TTNOGluten Explorer
TTNOGluten
Posted

Well the past few weeks have been interesting for some new diagnostic studies, was hoping that all the veteran celiac folks could shed some insight. I have been seeing a gastro for 2 months now who I really like, he takes time and is very thorough. I had another EGD 2 weeks ago and an entire battery of celiac labs completed again, which shows normal biopsies and all may labs having retruned to normal, including TTG Iga, Igg, antigliadin Iga, Igg, and deamidated gliadin. This is all good news, obviously as he states I am remaining gluten free to see this improvement, however I still get many of the same symptoms everday. Pretty much continous epigasttri gnawing with slight nausea, constant pain into my rib cage on the right and midback, and occaaionally on the left, and still frequent bloating and burping???

Gallbladder is out as of Dec. 13th, showed chronic cholecystitis. Limiting much of the processed foods, also have casein allergy, which I have removed from my diet, if it does slip in it is very infrequent. Still feel lousy though.

The Gastro is confused as isn't sure if these are manifestations of celiac still lingering, with everything else improved?? I guess what I am curious or wondering about is if patients cont. to feel like this even after there intestines and labs get better, and if so for how long??

Anyone with experience on this, or who has a similar process??

Thanks again in advance

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Lisa Mentor
Lisa
Posted

Try to eliminate dairy products and see if your symptoms are relieved. Or perhaps you have developed another intolerance.

TTNOGluten Explorer
TTNOGluten
Posted
  • Author

I have removed the dairy(casien) from my diet as well. NO real change

mommida Enthusiast
mommida
Posted

I have the same symptoms too. I also had my gall bladder removed. I do know of other intolerances that have developed since going gluten free. Pretty easy to figure out lobster makes me vomit. Foods with high iron content give me "D' and cramping.

If you figure anything out let me know. I'm sick of doctors treating me like a headtrip and I have to pay for the service. :angry:

Skylark Collaborator
Skylark
Posted

I think you probably have another food intolerance. Both dairy and nightshades (potato, tomato, etc.) get me. There are folks on the board intolerant to soy, and some to corn.

Austin Guy Contributor
Austin Guy
Posted

I found out a few months ago I was intolerant to corn, but until recently did not know that most vitamin C supplements are made from corn. So are magnesium stearate and stearic acid that labels state are derived from vegetable sources. Once I figured this out and quit supplements containing these I finally felt better.

GFinDC Veteran
GFinDC
Posted

Could it be you have an ulcer?

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Roda Rising Star
Roda
Posted

Did they check for H pylori when they did your scope?

Avalon451 Apprentice
Avalon451
Posted

You could do an elimination diet for a couple of months (get back to just plain meat and veggies), let things heal up and settle down, and then add stuff back in one by one to see what's bothering you.

mushroom Proficient
mushroom
Posted

I think you probably have another food intolerance. Both dairy and nightshades (potato, tomato, etc.) get me. There are folks on the board intolerant to soy, and some to corn.

And some like me intolerant to corn, soy, nightshades and legumes. It took me a couple of years to figure out or (in some cases) develop them. :rolleyes:

health nut Newbie
health nut
Posted

Holy cow- you pretty much have all the exact symptoms I do. I had my gallbladder out last year but have off/on had pretty much exactly those symptoms. For me they did an MRCP (an MRI of my bile duct) to make sure there still wasn't something obstructing it even though I don't have a gallbladder anymore. That was negative but I'm still having problems and now they think it might be Sphincter of Odi Dysmotility-- this is where the sphincter that empties from the bile duct into the GI tract doesn't function properly. I haven't had the test for this yet, but I'll be making an appointment when I start having symptoms again. These may be things you want to be bring up to your doctor if they haven't thought of it already. Your symptoms really sound more related to a problem in the area of your bile duct- especially the pain into the back, that is almost classic for that.

Good luck!!

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    • Mmoc
      Blood tests low iGA 4 years later digestive issues

      By Mmoc · Posted

      Thank you kindly for your response. I have since gotten the other type of bloods done and am awaiting results. 
    • Aretaeus Cappadocia
      Gluten free nuts

      By Aretaeus Cappadocia · Posted

      I wanted to respond to your post as much for other people who read this later on (I'm not trying to contradict your experience or decisions) > Kirkland Signature Super Extra-Large Peanuts, 2.5 lbs, are labeled "gluten free" in the Calif Costcos I've been in. If they are selling non-gluten-free in your store, I suggest talking to customer service to see if they can get you the gluten-free version (they are tasty) > This past week I bought "Sliced Raw Almonds, Baking Nuts, 5 lbs Item 1495072 Best if used by Jun-10-26 W-261-6-L1A 12:47" at Costco. The package has the standard warning that it was made on machinery that <may> have processed wheat. Based on that alone, I would not eat these. However, I contacted customer service and asked them "are Costco's Sliced Almonds gluten free?" Within a day I got this response:  "This is [xyz] with the Costco Member Service Resolutions Team. I am happy to let you know we got a reply back from our Kirkland Signature team. Here is their response:  This item does not have a risk of cross contamination with gluten, barley or rye." Based on this, I will eat them. Based on experience, I believe they will be fine. Sometimes, for other products, the answer has been "they really do have cross-contamination risk" (eg, Kirkland Signature Dry Roasted Macadamia Nuts, Salted, 1.5 lbs Item 1195303). When they give me that answer I return them for cash. You might reasonably ask, "Why would Costco use that label if they actually are safe?" I can't speak for Costco but I've worked in Corporate America and I've seen this kind of thing first hand and up close. (1) This kind of regulatory label represents risk/cost to the company. What if they are mistaken? In one direction, the cost is loss of maybe 1% of sales (if celiacs don't buy when they would have). In the other direction, the risk is reputational damage and open-ended litigation (bad reviews and celiacs suing them). Expect them to play it safe. (2) There is a team tasked with getting each product out to market quickly and cheaply, and there is also a committee tasked with reviewing the packaging before it is released. If the team chooses the simplest, safest, pre-approved label, this becomes a quick check box. On the other hand, if they choose something else, it has to be carefully scrutinized through a long process. It's more efficient for the team to say there <could> be risk. (3) There is probably some plug and play in production. Some lots of the very same product could be made in a safe facility while others are made in an unsafe facility. Uniform packaging (saying there is risk) for all packages regardless of gluten risk is easier, cheaper, and safer (for Costco). Everything I wrote here is about my Costco experience, but the principles will be true at other vendors, particularly if they have extensive quality control infrastructure. The first hurdle of gluten-free diet is to remove/replace all the labeled gluten ingredients. The second, more difficult hurdle is to remove/replace all the hidden gluten. Each of us have to assess gray zones and make judgement calls knowing there is a penalty for being wrong. One penalty would be getting glutened but the other penalty could be eating an unnecessarily boring or malnourishing diet.
    • 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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