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High Antibodies Even On gluten-free Diet


wattie

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wattie Newbie

Hi all,im new to the forum,i was diagnosed about 10 weeks ago through a blood test and endoscopy,my anti bodies level was 128,normal is 7,i had no symptoms apart from acid indegestion that i had for 12 yrs and took nexium everyday for it,then one day i felt really dizzy and tired and i went to the docs,he did a fbc blood test and i was anaemic,this is what started the chain of events to diagnosis.

I have been following the gluten free diet for 10 weeks now religiously and today i had my first outpatient clinic appointment with the gastro consultant and a blood test i had 2 weeks ago has came back that my iron levels are now mormal,my folic acid is now normal but my b12 is now low,the most alarming thing is my antibody count is still way up at 118 so she says im still getting gluten in my diet somewhere,im totally shocked at this as i followed the diet strictly,i was really disappointed at this,she says that it should be lower but it could just be early days for the antibody levels to go down,she says that its rare but some people dont respond to a gluten free diet but didnt say what would happen if that was the case,im terrified of what the treatment is for that,i hope ive just been glutened by something im eating my mistake but i dont know what,ive to go back in 6 months so i kind of got relief from that as they cant be that concerned or i would be back sooner.


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Roda Rising Star

If you are now just 10 weeks in then according to your post your last blood test was done 8 weeks in. That is really not very long. By the sound of it you have had symptoms (acid reflux) for 12 years. That is a long time for gluten to do damage and it may take quite awhile for the antibodies to go down. I didn't even have repeat blood work until the 6 month mark. Keep being vigilant. Everybody heals at a different rate. I would't get upset that the levels are still elevated at this point. Now I would have them checked between 6-12 months and see where you are at. By the way, has your reflux improved? This was my first "percieved" symptom that sent me to the doctor. It was horrible but I still refused to live on meds. After I went gluten free that was the first symptom to clear up for me.

adab8ca Enthusiast

i second what Roda says...it can take years to heal...not to freak you out but this does not happen quickly.give yourself time to heal...

wattie Newbie

i second what Roda says...it can take years to heal...not to freak you out but this does not happen quickly.give yourself time to heal...

thanks guys,im not too freaked out,i know its early days,it was the bit about some people dont respond to the diet and need some more tests like a longer endoscopy and dna testing,dont know what the dna thing is and i dont fancy the long camera,the normal one was bad enough,i will always stick to the diet i dont find it hard just a nuisance.

wattie Newbie

i second what Roda says...it can take years to heal...not to freak you out but this does not happen quickly.give yourself time to heal...

also,ive had no reflux since going gluten-free,although im still on nexium,i have to stop them the doc says so im stopping them today,hope its gone forever.

Roda Rising Star

also,ive had no reflux since going gluten-free,although im still on nexium,i have to stop them the doc says so im stopping them today,hope its gone forever.

Just be aware that in some instances stoping PPI's cold turkey can lead to a rebound effect. Basically the meds are decreasing the acid produced in the stomach. When you stop taking it the acid producing cell are in effect "turned" back on, or start producing more acid. I was afraid to take a PPI because of that so I suffered until my diagnosis. Last year after my repeat scope the doc found a stomach ulcer, so he wanted to prescribe a PPI. I refused (I did try two capidex pills once to see and had horrible side effects) so he gave me an H2 blocker zantac. I did take it for about 2 months, long enough for my ulcer to heal. He wanted me to take it 6 months. I haven't had anymore trouble and I feel the ulcer is healed. I don't know if you can get rebound from H2 blockers or not, I didn't.

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    • Aretaeus Cappadocia
      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
      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
      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
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    • trents
      I don't know of a connection. Lots of people who don't have celiac disease/gluten issues get shingles.
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