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Testing Question


raspberrylemonade

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raspberrylemonade Newbie

Hi all,

I'm new here and just learning, so I apologize if this question is super basic, but I have a question about celiac testing. I've read that the blood tests check for levels of IgA, and specifically for certain forms of it - is that right? I've also read somewhere that if you're on immune-suppressing drugs, you're likely to get a false negative result, because your IgA levels will be depressed by the immune-suppressors. I currently take a medication called cellcept, which is an immune-suppressor that depresses IgA (and is used sometimes to treat IgA nephropathy). So, I'm wondering if there would be any point to my doing a blood test, since it seems that I'd wind up with a false negative due to my medication? And, if a blood test isn't a viable (or reliable) option for me, is the stool test going to be the next best thing, or should I try eating gluten-free for a while and see if that helps first? I'm concerned about going gluten-free without an actual diagnosis, because I'm worried that I'll be too lax if I don't have a hard and fast reason to keep strictly to the gluten-free diet?

On a somewhat different note, I'm on the cellcept for an autoimmune-type lung disease for which we have never found the root cause. I'm wondering if it is at all possible if gluten, or some other food allergy, could be behind it? I literally have no other leads - I have none of the known exposures whatsoever. Is it just wishful thinking to hope that it could be something as simple as a food allergy?


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adab8ca Enthusiast

Hi all,

I'm new here and just learning, so I apologize if this question is super basic, but I have a question about celiac testing. I've read that the blood tests check for levels of IgA, and specifically for certain forms of it - is that right? I've also read somewhere that if you're on immune-suppressing drugs, you're likely to get a false negative result, because your IgA levels will be depressed by the immune-suppressors. I currently take a medication called cellcept, which is an immune-suppressor that depresses IgA (and is used sometimes to treat IgA nephropathy). So, I'm wondering if there would be any point to my doing a blood test, since it seems that I'd wind up with a false negative due to my medication? And, if a blood test isn't a viable (or reliable) option for me, is the stool test going to be the next best thing, or should I try eating gluten-free for a while and see if that helps first? I'm concerned about going gluten-free without an actual diagnosis, because I'm worried that I'll be too lax if I don't have a hard and fast reason to keep strictly to the gluten-free diet?

On a somewhat different note, I'm on the cellcept for an autoimmune-type lung disease for which we have never found the root cause. I'm wondering if it is at all possible if gluten, or some other food allergy, could be behind it? I literally have no other leads - I have none of the known exposures whatsoever. Is it just wishful thinking to hope that it could be something as simple as a food allergy?

hi there

i am NO expert but there is a test called TTG, where they test the IgA TTG. However, many celiacs are low in IgA and therefore, I believe there is a test for the TTG that is for the IgG. SImilarly, there are test for gliadin that are for IgA and IgG. There is another test for celiac called an EMA that I believe does not depend on IgA levels at all (although do not quote me on that). May be worthwhile asking your Dr about these if you can?

Re: lung issues, I am so sorry you are having this problem. I know the gluten can cause a WHOLE lot of problems for a whole lot of people that expand way beyond the typical gastrointestinal symtoms.

If you want to pursue the testing, you need to be on gluten. If you want to give the diet a try and it helps, that may be all the impetus you need to stay with it! Good luck!

ada

cassP Contributor

ive heard again and again from many- that having more than one autoimmune disease is very very common. i had a client tell me "they come in 3's"...

a lot of people on here have Celiac and Hashimotos Thyroiditis and Lupus, etc.

of course it DOESNT HAVE TO BE like that- but it definitely means that it's worth you getting the proper tests- as Celiac or Gluten Intolerance might be a real thing for you- and in turn the proper diagnosis & diet COULD alleviate your other issues

Skylark Collaborator

Your question is not basic at all. I suspect you're right about your medication interfering with celiac testing but I've never read anything either way. You need to seek expert help here, as I don't know whether or not the IgG celiac tests would work in your case - you're not naturally low IgA and I don't know that your immune system would compensate in the same way. There isn't a celiac clinic in your area where you can ask, is there?

The stool test also looks for IgA so I don't know that it would be any more reliable than serum.

So far, gluten has been associated with GI autoimmunity, skin autoimmunity, and multiple kinds of nervous system autoimmunity. It is not inconceivable that it could cause lung autoimmunity. Tissue transglutaminase, a protein involved in celiac autoimmunity, is present in some lung diseases.

There is no harm in trying the diet, but if you want to see if it helps your lung disease you will have to be ultra-strict. If you get relief, cheating at all will make you sick again by triggering the autoimmunity, whether or not you have any sort of diagnosis.

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    • Mmoc
      Thank you kindly for your response. I have since gotten the other type of bloods done and am awaiting results. 
    • 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
      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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