Confusing blood results-4 yr old

[NewAdventures]

  I’m new to forums but I was hoping for some guidance.  We went to children’s hospital Rheumatology due to his symptoms.  They did lots of blood work for many suspected issues but surprisingly one celiac test came back mildly positive.  We are bring sent to gastro clinic but I dont want to put him through unnecessary testing if I don’t have to.

  Symptoms that brought us to the specialist... unexplained low grade fevers (100.4-101) almost everyday but only in the daytime. Fevers never go above 102 and are never at night or first thing in the morning. Mild Eczema. Extreme behavior issues with possible asd or adhd. Occasionally gets a spot on his lip that looks like the start of a blister (looks like a hive but isnt) but never fully blisters.  No gastro symptoms. No confirmed family history although his aunt and niece are gluten free without official testing.

  Blood results 

IGG—790 (normal 444-1187mg)

IGM—127 (norm 41-186)

*Transglutaminase IGA—24 (normal <19.9, indeterminate 20-39, >40 pos)
 

Endomysial AB IGA—Negative

Immunoglobulin D IGD—2mg (<10 neg)

*Total IGA—243 (I don’t have full numbers but know that this much higher than normal.

  Any advice would be helpful.  It looks like negative results to me but I don’t understand what his transglutaminase IGA results means since they are in between negative and positive. We have a virtual appointment with the gastro in a month but would like to mentally prepare for possible outcomes.  Thank you

[trents]

Transglutaminase IGA—24 (normal <19.9, indeterminate 20-39, >40 pos)

I'm guessing this is what we usually call tTG-IGA which is the least sensitive blood antibody test for celiac disease but also the most specific. So, when it is elevated it points strongly to active celiac disease. This is the first time I have seen an "indeterminate" category.

It is very common for GI distress to be very minimal or absent, even in active celiac disease. Especially, in the initial stages of the disease. Eventually, that may change. 

I would think high total IGA numbers would indicate some kind of autoimmune inflammatory process going on.

Could skin issues be DH? If so, this is a classic celiac marker. 

The endoscopy with biopsy of the small bowel lining is the gold standard of diagnosis for adults. Not sure how reliable it would be for children as their bodies are so resilient that damage to the villi may not show.

[NewAdventures]

Thank you very much for your response.  He’s being tested for fever syndromes and so far everything has come back negative except his Transglutaminase IGA and celiac wasn’t even on the radar it was just included as a just in case! His eczema is very mild and easily controlled.  
  Yes the indeterminate category is what’s so confusing.  His doctors know something is off but they can’t figure out what.  
  I should note that he was tested for celiac when he was 2 yrs old due to diarrhea.  He was fully negative on everything and it turned out to be a dairy allergy that he has since outgrown.  

Thank you very much for your insite.  We are just trying to mentally prepare so we can go to the gastro appointment informed and ready

[Scott Adams]

Welcome to the forum!

I too have never seen an "intermediate" category for TTG results. Based on everything you've shared, I would say that at the very least he's got non-celiac gluten sensitivity (NCGS) for which there is no current diagnostic tests. It's pretty clear that he's having an autoimmune reaction to gluten, and according to his results a "mid-level" reaction, and he's got lots of symptoms consistent with celiac disease, including relatives who may have it. 

At this point you should definitely consider a gluten-free diet, whether or not you get the endoscopy, which you probably should consider doing. 

You also might want to get the genetic test for celiac disease, if this is not a financial burden, just to see if he's got the markers for it.

[trents]

Just a heads up, here. If you do decide to go for an upper GI endoscopy do not start your child on a gluten free diet ahead of time. It will likely invalidate the results. He needs to be eating regular amounts of gluten daily for at least two weeks before an endoscopy/biopsy.

Also, to clarify something Scott said, there currently is no noninvasive test to distinguish between celiac disease and gluten sensitivity. And the symptoms and long term health risks are much the same.

[NewAdventures]

Thank you Scott and Trents.  We will not be changing his diet unless there is an official diagnosis and its good to hear that is the right choice. Also, I have extreme/epi pen allergies to most fruits and veggies (but confirmed I do not have celiac via endoscopy) so going gluten free will be extremely challenging for our house.  Of course we would absolutely do it if he has celiac.
  I have only read 1 article that linked unexplained fevers as a symptom to celiac and that’s his biggest issue. Due to covid his temps are taken everywhere he goes (daycare etc) and he’s always pinging too high  Thank you again for the responses we are just so confused by his results.

 

[trents]

Yeah, I don't have any ideas for the persistent/reoccurring fever. The pattern of that is unusual. Seems like it might be tied to some kind of diurnal bio rhythm mechanism. Have you had his thyroid checked?

[Scott Adams]

1 hour ago, NewAdventures said:

Of course we would absolutely do it if he has celiac.

So to clarify, I would have him go gluten-free even if his test results say that he doesn't have celiac disease. As mentioned, from everything you've shared here, he likely has gluten sensitivity.

[NewAdventures]

Yes his thyroid has been checked.  He has also been investigated for possible malignancies that are uncommon as well as a huge list of other things.  He had some of the classic CBC panel come back abnormal but just barely. 
  The GI’s nurse called me a bit ago to ask more questions regarding his symptoms, fever journal, eating habits etc. They also looked over his last allergy & CBC tests he had in December and his blood work for celiac that was done 2 years ago. 
  The nurse did state that while it is extremely rare there are documented cases of unexplained fever as a child’s main symptom and that the dr will go over everything with me at our appointment.
  I think if they recommend an endoscopy we will go forward with that.  Regardless of the result I think he will possibly try gluten free afterwards to see if it is a sensitivity like you suggested Scott as it might be helpful.  Of course we will wait till all celiac testing is completed.  
  Thank you to all the responses! In our family we are well versed in allergies and other disabilities but celiac is newer territory.  
  I just thought more bloodwork would come back as positive and not just one mild positive. 
 Is Transglutaminase IGA specific to celiac?

[Scott Adams]

This is an older article, but still valid "In summary, the tTG ELISA is measuring the same thing that the endomysial IFA is measuring but with a method that is more sensitive and specific and not subject to interpretation. IgA class Reticulin antibodies are found only in Celiac disease and dermatitis herpetiformis.":

 

[NewAdventures]

Thank you that a very helpful and informative article! 

[AnonyousCda]

13 hours ago, NewAdventures said:

  I’m new to forums but I was hoping for some guidance.  We went to children’s hospital Rheumatology due to his symptoms.  They did lots of blood work for many suspected issues but surprisingly one celiac test came back mildly positive.  We are bring sent to gastro clinic but I dont want to put him through unnecessary testing if I don’t have to.

  Symptoms that brought us to the specialist... unexplained low grade fevers (100.4-101) almost everyday but only in the daytime. Fevers never go above 102 and are never at night or first thing in the morning. Mild Eczema. Extreme behavior issues with possible asd or adhd. Occasionally gets a spot on his lip that looks like the start of a blister (looks like a hive but isnt) but never fully blisters.  No gastro symptoms. No confirmed family history although his aunt and niece are gluten free without official testing.

  Blood results 

IGG—790 (normal 444-1187mg)

IGM—127 (norm 41-186)

*Transglutaminase IGA—24 (normal <19.9, indeterminate 20-39, >40 pos)
 

Endomysial AB IGA—Negative

Immunoglobulin D IGD—2mg (<10 neg)

*Total IGA—243 (I don’t have full numbers but know that this much higher than normal.

  Any advice would be helpful.  It looks like negative results to me but I don’t understand what his transglutaminase IGA results means since they are in between negative and positive. We have a virtual appointment with the gastro in a month but would like to mentally prepare for possible outcomes.  Thank you

I've read the other replies and support them. 

Gluten-Free diet would be a strong direction.  Which means no soda pop as well. 

Other symptoms is after eating gluten having vomiting moments. Which the stomach acid causes tooth enamel damage.  Maintain proper gluten free teeth brushing.  Cavities at a young age is expensive and even more expensive with adult teeth.  Look for a possible gluten out, maybe a visible bald spot at the top of the head at age 5 or 6. If Junior high sports then a medical exam usually takes place. If weak knees, weak ankles is confirmed by Dr's examination.  Then most likely gluten autoimmune disease. 

Starting early is ideal. Add in the ABCs of Vitamins. Not a daily Vit not enough dose.

[trents]

You're saying soda pop contains gluten?

[AnonyousCda]

Only drink certified gluten free drinks.  Soda pop is acid.  Acid takes away minerals from teeth and bone.  Acid just double downs on negative gut flora and depriving the body of needed calcium.  Gluten free diet I believe in taking bold moves in countering acids with alkaline drinks more so. How far to go in a gluten diet for a normal digestive system? https://flatulencecures.com/is-soda-acidic/

[trents]

Calcium needs acid to be assimilated since it is a base. If you raise the gut PH with antacid meds or too many alkaline beverages you are shooting yourself in the foot when it comes to assimilating nutrition. The gut also needs a certain amount of acid irritation to stimulate the rebuilding of the lining. Too much irritation is bad but too little is also bad.  

[Wheatwacked]

"Although celiac disease is readily considered in patients with classical presentations of the disease, atypical manifestations may be the only presenting symptoms. We present a case of celiac disease in a 16-year-old female presenting as fever of unknown origin, which has not been reported previously...if celiac disease was more readily considered in the investigation of fever of unknown origin, more cases may be promptly diagnosed." Celiac Disease Presenting as Fever of Unknown Origin (hindawi.com) "https://www.hindawi.com/journals/crigm/2013/676327/

[nora-n]

The high total IgA could be the reason for the grey zone Ttg IgA. The test is dependent on IgA 
 

[trents]

34 minutes ago, nora_n said:

The high total IgA could be the reason for the grey zone Ttg IgA. The test is dependent on IgA 
 

I'm not sure that high total IGA will skew a celiac antibody test but low total IGA will.

[NewAdventures]

I just wanted to update this post in case anyone has similar issues down the line.  My 4 year old had a week of 101-102 fevers so his dr had us redo his blood testing to look for changes during a fever episode.  
  The only difference was that his ttg iga is now 46.  His previous number was 24.  So this number is now a full positive (anything over 40 is positive).  We see the GI in a week and will go for further testing.  

  The team he has been seeing at the children’s hospital said that fever as a symptom of celiac is incredibly rare.  However, if my son does indeed have celiac then his main and only very noticeable/debilitating symptom was unexplained fevers.

  We will be keeping him on full gluten until all celiac testing is complete.  I will update this post again when we know more.  I just know that fever as a symptom isn’t listed anywhere so it wasn’t on our radar!  
  Thanks again to everyone and their input and advice! It’s been extremely helpful
 

[trents]

Thanks for the update. Please keep us posted. We are learning that celiac disease/gluten sensitivity symptoms and health related expressions continually defy the neat box we used to put them in. It is becoming increasingly obvious that these gluten-caused diseases manifest themselves with much greater variability than we imagined even just a few years ago.

[Wheatwacked]

On 5/17/2021 at 1:33 AM, Wheatwacked said:

Celiac Disease Presenting as Fever of Unknown Origin (hindawi.com) "https://www.hindawi.com/journals/crigm/2013/676327/

 

[AnonyousCda]

On 6/2/2021 at 8:59 AM, NewAdventures said:

I just wanted to update this post in case anyone has similar issues down the line.  My 4 year old had a week of 101-102 fevers so his dr had us redo his blood testing to look for changes during a fever episode.  
  The only difference was that his ttg iga is now 46.  His previous number was 24.  So this number is now a full positive (anything over 40 is positive).  We see the GI in a week and will go for further testing.  

  The team he has been seeing at the children’s hospital said that fever as a symptom of celiac is incredibly rare.  However, if my son does indeed have celiac then his main and only very noticeable/debilitating symptom was unexplained fevers.

  We will be keeping him on full gluten until all celiac testing is complete.  I will update this post again when we know more.  I just know that fever as a symptom isn’t listed anywhere so it wasn’t on our radar!  
  Thanks again to everyone and their input and advice! It’s been extremely helpful
 

So young harder to diagnose the fever issues.  As with gluten allergies vitamins are depleted within the body causing multiple health issues.  For example Vitamin A is not getting to the right body parts.  The mucus membranes in the throat flare up more often causing pneumonia do to mucus entering into the lungs. Because the lacking of Vitamin A.  I'm talking about large solid lumps of mucus in the throat that form.  

I use to get high fevers when younger and also vomit once awhile from eating to much gluten.  I stopped eating gluten at age 30 when symptoms was over the top noticeable. I was somewhat diagnosed by a DR for gluten issues in 7th grade during a sports physical exam. My father denied I was sick and was perfectly healthy.  Resulting in years of eating gluten and poorer health down the road. Currently age 47.  Mind fog and IBS takes a toll threw the years. 

[Wheatwacked]

Ever notice how angry people get when you suggest they try gluten free? That's the addiction talking. Similar to the response from an alcoholic when you suggest they have a problem. The general population thinks that Celiac or NCGS means you are defective and so immediately become defensive. More correctly is that the foods we are marketed are defective. In my grammer school class in the 50's of the 30 boys and girls, there was the one skinny kid (me) and one fat kid (Tommy). Now more than half the kids are obese.

When you say mind fog I think iodine deficiency. When you say IBS I think Potassium deficiency. Iodine has been of interest to national security since the beginning of the nuclear age, coincidently when the Wolff-Chaikoff effect was published. Cod Liver Oil is a great source of vitamin A.

 

[AnonyousCda]

7 hours ago, Wheatwacked said:

Ever notice how angry people get when you suggest they try gluten free? That's the addiction talking. Similar to the response from an alcoholic when you suggest they have a problem. The general population thinks that Celiac or NCGS means you are defective and so immediately become defensive. More correctly is that the foods we are marketed are defective. In my grammer school class in the 50's of the 30 boys and girls, there was the one skinny kid (me) and one fat kid (Tommy). Now more than half the kids are obese.

When you say mind fog I think iodine deficiency. When you say IBS I think Potassium deficiency. Iodine has been of interest to national security since the beginning of the nuclear age, coincidently when the Wolff-Chaikoff effect was published. Cod Liver Oil is a great source of vitamin A.

 

Breaking the stereotyping of Celiac and gluten allergies is a hard journey that is never ending.  On iodine for the thyroid it does wonders.  Its a little hard to find a solid dosage amount for Potassium iodide. I take Terry Naturally, Thyroid Care Plus 20,000%.  I don't take a multi pill of anything.  I just take large dosages of Vitamins, Minerals, supplements, and amino acids.  With a lot of trial and error.  This also means plenty of costs by the rewards for positive a health is worth the expenses. 

[Wheatwacked]

14 hours ago, AnonyousCda said:

With a lot of trial and error

I tried a thyroid support supplement for six months, I think it was one of Dr. Brownstein's, for six months and did not experience any benefit and it is expensive. Then I did the math and found that 2.5 grams of sushi nori (one sheet) has 400 mcg iodine. Within a week I noticed improved muscle tone in shoulders and chest. I have it with my morning coffee since 2016. I chose Organic One brand for the best price and taste and it doesn't require a warning about heavy metals. RDA is 150 mcg; upper limit is 1150 mcg. Other seaweeds have quite a bit more iodine so for easing dosing I chose Nori.  I also drink several glasses of 100% grassfed milk a day (about 100 mcg iodine per glass). When I was young, before 1970, a slice of bread had 100 mcg. so a sandwich and glass of milk equaled 300 mcg.

Two ounces of almonds 60g supplies 15 mg vitamin E, the RDA is 15, upper limit 1000g.

The problem with multivitamins is that they all have synthetic vitamin A, E and Folic Acid. E is often made from wheat germ. 

 "Vitamin E was linked to a 13% higher risk of heart failure and a 21% increased risk of hospitalization for heart failure." https://www.webmd.com/food-recipes/news/20050315/vitamin-e-harms-more-than-helps.

"A few prospective studies have shown that long-term use of high doses of some supplements, such as retinol, β-carotene, B vitamins, and vitamin E, increase lung cancer risk in current and former smokers." I still smoke.

"A 10-year study showed that the risk of prostate cancer was increased in men who took 1 milligram (mg) supplements of folic acid.May 10, 2019." I haven't tracked it down, but i believe that the prostate and endometrium come from the same embryonic source (one male, one female). Whats bad for the gander is bad for the goose seems appropriate here. My enlarged prostate (since 1971) quickly improved on GFD and I like to think my wife's endometriosis would have also, if she were alive. (RIP ovarian cancer 2005)