"Weak positive" blood test for son's possible diagnosis. Now what?

[TwoFish]

Hi there- we feel like we are trapped in a "no mans land" on a possible road to diagnosis... my teen son was diagnosed with Type 1 diabetes 3 years ago, and ever since then they screened for celiac every year. His numbers have slowly crept up from 17, to 21, and now 27... which now puts him in what his Endo called a "weak positive" range and isn't quite sure how to approach it since he said celiac usually presents with those numbers "off the charts". We've waited for over a month to finally get in to see a GI specialist who will help us decide if we should pursue an endoscopic biopsy. I guess with kids they hesitate to do it "too soon" because if it's a weak positive, the biopsy may not show anything yet... meaning we have to wait until his numbers are higher and send him back in for another one. They don't like doing multiple biopsies on kids because it carries more risk I guess. Anyway, I'd be willing to wait if it wasn't for the following concerning symptoms he's had, the most prominent being: 13 pounds of unexplained weight loss in 3 months, fatigue, and chronic leg cramps mostly in both calves. I would really like him to feel better, but worry they'll go in there and not be able to diagnose yet because his numbers aren't off the chart. Thoughts? Are these red flag symptoms for celiac and should we push for a biopsy at this point? Thanks for your insight...

[cyclinglady]

I am sorry that your son is sick.

I had a weak positive too, yet my biopsies revealed a Marsh Stage IIIB (moderate to severe damage).  I tested positive only to the DGP IgA too and during follow-up testing too.  

I would ask for a complete celiac panel, as just a rise in the TTg can be associated with other AI issues like Crohn's.  This will not neceassrily get you a diagnosis, but will help solidify the celiac diagnosis making the choice to go forward with an endoscopy easier.  

Do more research, but mine has shown that the blood tests results do not necessarily correlate with intestinal damage.  That is why doctors still recommend a biopsy.  Blood tests are for screening.   Now, in Europe with kids, they are diagnosing based on blood tests, genetic and a gluten-free diet to determine a diagnosis and avoiding the enoscopy.  But recent research from  Dr. Fasano's team found that 20% of kids are not healing even though some had normal celiac follow-up blood tests.    One of the "take aways" from the study, was the continued need for endoscopies to diagnosis and for follow-up care.  

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i hope this helps you make the right decision.  But since he already had TD1, the risk is there and so are long term complications for not treating a person with TD1 and celiac disease.  

[TB-136]

I am sorry that you are struggling with your son.  I was diagnosed with Celiac Disease and it was an error.  I had a tapeworm.  ALL doctors missed it for YEARS. 

There are over 3000 parasites.  Most tests to do not test for more than a dozen.  Plus tests are not reliable. 

Symptoms of Celiac and parasitic infections are the same ....

Immunoglobulin A (IgA) anti-tissue transglutaminase antibody being the single preferred test for Celiac.  Antibodies are proteins that are produced by the immune system to fight viruses, bacteria, and other organisms that infect the body … well, maybe that organism is a parasite like a tapeworm and that is what is causing the elevated IgA levels. 

It is claimded that if abnormally elevated levels of IgA endomysial and anti-tissue transglutaminase antibodies are found, a person almost certainly has celiac disease.

IgA results are correctly indicating that the body is experiencing an assault by an invader.  It does not identify the invader.  It is not a specific test, though the literature tends to brush over that.  Doctors erroneously believe that the invader is gluten, because symptoms are exasperated after one eats gluten.  But this is not a true causal connection.  There is a confounding variable – parasites.  If immune system is reacting to an invader … gluten is not the direct assailant, only an aggravator.

Peace & Love! 

[cyclinglady]

3 hours ago, TB_136 said:

I am sorry that you are struggling with your son.  I was diagnosed with Celiac Disease and it was an error.  I had a tapeworm.  ALL doctors missed it for YEARS. 

There are over 3000 parasites.  Most tests to do not test for more than a dozen.  Plus tests are not reliable. 

Symptoms of Celiac and parasitic infections are the same ....

Immunoglobulin A (IgA) anti-tissue transglutaminase antibody being the single preferred test for Celiac.  Antibodies are proteins that are produced by the immune system to fight viruses, bacteria, and other organisms that infect the body … well, maybe that organism is a parasite like a tapeworm and that is what is causing the elevated IgA levels. 

It is claimded that if abnormally elevated levels of IgA endomysial and anti-tissue transglutaminase antibodies are found, a person almost certainly has celiac disease.

IgA results are correctly indicating that the body is experiencing an assault by an invader.  It does not identify the invader.  It is not a specific test, though the literature tends to brush over that.  Doctors erroneously believe that the invader is gluten, because symptoms are exasperated after one eats gluten.  But this is not a true causal connection.  There is a confounding variable – parasites.  If immune system is reacting to an invader … gluten is not the direct assailant, only an aggravator.

Peace & Love! 

Were you diagnosed with celiac disease with both a blood panel (TTG, EMA and DGP) and intestinal biopsies via endoscopy?  

An IgA deficieny test is often given as a control test for celiac disease.  It validates the celiac-related IgA tests (e.g. tTG IgA).  If this result is elevated,  it can mean that you have autoimmune disorders (IgA very elevated and i have both celiac disease and Hashimoto's thyroiditis).  

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While a parasite is possible, the child already has TD1 which is linked (same genes) as celiac disease (about 10% of TD1 patients can go on to develop celiac disease).  

By the way, I had no intestinal symptoms when i was diagnosed -- just anemia.

[TB-136]

Greetings,

 

I hope that you are well! 

Anemia is a typical first symptom of intestinal parasites.  

No endoscopy needed ... cancelled the test after I found out I had worms.   Tapeworms do the damage to intestines, so test would be testing for damage that is known to exist.  Waste of $ and time. 

Just a thought. More research is coming out every day linking protozoa and worms as the cause of IBS, IBD, SIBO, gluten intolerance.  Antibody test is going to react to an invader.  No way to confirm it is gluten.  The test is non-specific.   

Anyway, was horribly gluten intolerant and now that parasites are gone (it took a while to clear), I can eat like I used to.  I also had hypothyroidism.  I refused to take Synthroid and kept looking for the root cause.  It took a lot of work to find … research and self-experimentation. My doctor wanted to put me on HRT, but refused that.  Allopathic doctors only was interested in treating the symptoms. Hormones and thyroid turned around after nutrient levels were restored. 

Just a thought … But celiac did not grow so rapidly if there is not something else involved. 

Sushi and sashimi consumption went up in the last 40 years and thus, more people have tapeworms, as that is one of the easiest ways to get tapeworms.  I had it for years and had NO idea, I was infected.  There are rather silent and symptoms start slowly and get worse as the months & years go by.

I hope your son gets better. 

Peace!

PS - First sushi restaurant in United States opened in 1966, now it is availiable EVERYWHERE.

 

 

[kareng]

1 hour ago, TB_136 said:

Greetings,

 

I hope that you are well! 

Anemia is a typical first symptom of intestinal parasites.  

No endoscopy needed ... cancelled the test after I found out I had worms.   Tapeworms do the damage to intestines, so test would be testing for damage that is known to exist.  Waste of $ and time. 

 

Just a thought. More research is coming out every day linking protozoa and worms as the cause of IBS, IBD, SIBO, gluten intolerance.  Antibody test is going to react to an invader.  No way to confirm it is gluten.  The test is non-specific.   

 

Anyway, was horribly gluten intolerant and now that parasites are gone (it took a while to clear), I can eat like I used to.  I also had hypothyroidism.  I refused to take Synthroid and kept looking for the root cause.  It took a lot of work to find … research and self-experimentation. My doctor wanted to put me on HRT, but refused that.  Allopathic doctors only was interested in treating the symptoms. Hormones and thyroid turned around after nutrient levels were restored. 

 

Just a thought … But celiac did not grow so rapidly if there is not something else involved. 

 

Sushi and sashimi consumption went up in the last 40 years and thus, more people have tapeworms, as that is one of the easiest ways to get tapeworms.  I had it for years and had NO idea, I was infected.  There are rather silent and symptoms start slowly and get worse as the months & years go by.

 

I hope your son gets better. 

 

Peace!

PS - First sushi restaurant in United States opened in 1966, now it is availiable EVERYWHERE.

 

 

 

 

 

 

 

 

 

 

 

 

I have never eaten sushi, but I have Celiac.  

[ravenwoodglass]

TB, The DGP tests are actually quite specific to Celiac. Please if you have found peer reviewed research showing that parasites can elevate those tests please post links.

If you never had an endoscopy how exactly were you diagnosed with celiac? And how did you find out you had a tapeworm? A tapeworm would be visible during a colonoscopy as would other parasites like roundworms.

Also one can have both celiac and other issues.  I do hope folks don't run out and get over the counter preperations that could be quite dangerous for a compromised system because of your posts.

[ironictruth]

So, in the 90's, celiac researcher Alessio Fasano came to the US and noted that the rate of diagnosed celiac was roughly 1 in 10,000 but more like 1 in 250 in Europe at the time. He and his team paid a processing fee for some blood from the Red Cross and tested it against TTG.  Guess what? The US is just like the rest of the world, the disease was not being tested for. 

Personally, I think this plays a role in the growth rate of diagnosis. Education gets around eventually. 

On a side note, I went to Mass General recently, where Alessio Fasano works, and they actually informed me that they had some trouble with DGP tests and generally disregard them. This shocked me as everything I read thus far says they are very specific tests.  I have tested weak positive to DGP IGA, negative to IGG, and strong positive in the IGA/IGG combined assay only to test negative shortly after to the separated IGA and IGG tests. Most of these, except the first weak positive, were on a gluten-free diet. 

 Apparently they were scoping kids testing positive who ended up with negative biopsies and had to talk to their labs about rerunning different tests. Something I managed to figure out myself by accident. 

There is a study done on elevated DGP and young children whose DGP went back down to normal levels without a gluten-free diet. There is also another study on elevated IGA levels in folks with liver disease, some of who do not carry a celiac gene (or at least those we do not know about) and some had no damage on biopsy.

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 What is interesting however, is the fact that these parents were bringing their children to the Mass General Clinic to begin with due to suspecting celiac.  It makes you wonder how the disease process works. Perhaps the antibodies are not only attacking the gut, but other areas such as thyroid cells which actually can be located in the gut as well. 

I am still sick. A little terrified as my pain has gotten worse, my right ribs have pressure, left leg buzzes, I get dizzy, heart races after eating, my thyroid is still inflamed and there are some enlarged cervical lymphnodes on ultrasound now. I was hanging my hat on celiac due to duodenitis in August and the positive combined DGP test. Now I am not sure. I tried some gluten Friday night and I was just as sick as I always am, no worse.  Sadly, when I made the decision to do this and figured if I get sick as hell at least I'll finally know, my son miraculously came down with a stomach bug. So now if I do get sick in the next day or so I won't know what it was that caused it. My luck. Whatever I have, I certainly have learned a lot about celiac and this wonderful community. 

Symptoms are always worth investigating further. Parasites and worms make sense for some. So does celiac. So does Whipple's Disease in rare cases, or HIV.  You have to be willing to work with your doctor and find a doctor willing to work with you.   this has been the most difficult thing for me. Do not self treat that is dangerous. I think half the time doctors giving you medications are dangerous enough. I was put on Prilosec and Xanax for a while. Come to find out I have no acid reflux and xanax can have nasty physical withdrawl symptoms  even absent mental ones.  So then I get off the Prilosec and have acid rebound that I never had an issue with before and now I have to deal with cutting back on the freaking xanax.

Do not self treat based on these boards! 

 

 

[TB-136]

Tapeworm discovery:  I saw it in toilet after doing a baking soda enema.  I have specimens frozen as that was only the beginning of what would follow as I began parasite cleanse protocols.    

I am not here to debate my doctor's error in diagnosing me with likely Celiac, after viewing my bloodwork and symptoms.  I am only here to report that I was diagnosed wrongly and had all symptoms and blood work that is exhibited with Celiac, but I had intestinal worms and not Celiac or any GLUTEN issue like NCGS. 

You can get tapeworms from pork and beef as well – just different species.  I had the species that is transmitted from fish.  Also you can get tapeworms from another human though shaking hands with someone who has them and did a poor job of washing their hands or touching objects that s/he touched, restaurants with poor sanitary or hygiene, contaminated food [for example, using same utensils – like knives or cutting boards – for raw meat/fish and vegetables].

I am only sharing my information that shows another perspective.  Allopathic doctors are not (typically) well trained in parasitology or nutrition.

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From Celiac Disease Foundation at celiac.org on ways to diagnosis:

Blood Antibody Test
Immunoglobulin A (IgA) anti-tissue transglutaminase antibody being the single preferred test.   
If abnormally elevated levels of IgA endomysial and anti-tissue transglutaminase antibodies are found, a person almost certainly has celiac disease.

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Antibodies are proteins that are produced by the immune system to fight viruses, bacteria, and other organisms that infect the body … well, it is possible that organism is a parasite like a tapeworm and that is what is causing the elevated IgA levels, as was the case in my situation.

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"Samples of the lining of the small intestine will be studied under a microscope to look for damage and inflammation due to celiac disease. 
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In reality, the only thing the biopsy proves is that there is damage and inflammation - cannot make any causal claims that conclude it is due to celiac disease. 

Best of luck in your health journey!