Interpreting test results

[Wheatwacked]

What an amazing kid you have! At three years old she accurately self diagnosed and implemented her own treatment for what often takes doctors years to do. And great parents that supported her choices.

While monitoring your vitamin and mineral plasma status, keep in mind that some blood levels are tightly controlled for heart health and normal blood plasma levels do not neccessarily indicate sufficient intake for intracellular sufficiency. Potassium, Calcium, Sodium, iodine for example.  Good that you are seeing a doctor and nutritionalist specializing in Celiac Disease.  Also good that the whole family is being tested.  Eating wheat is not needed in a healthy diet.  We've just been marketed to believe so because it is so profitable for Business.  Begs the question: Why do so many Campbells Soups have wheat added?

[Eugenia Carvalho]

On 10/14/2021 at 2:23 PM, deanna1ynne said:

Backstory: 8 yo has refused to bread, pizza, muffins, pasta, etc. since she was 3. We didn't really think it was a big deal until she told us at 7 that it hurt her stomach. So we talked with her doc, got a celiac panel ordered, and made her eat wheat for 4 weeks beforehand. She cried everyday for two weeks, and was on the verge of not eating ANYTHING anymore, saying it hurt too badly, but then right at 2 weeks, she stopped complaining, stopped crying, and seemed fine again. So I figured maybe it was a false alarm and almost quit the gluten trial. At the urging of friends we finished and had her tested.

Currently, we have test results back; the lab tech said, "It's showing a negative, but it actually looks like she might have it."

igg < 0.8

iga transgluten 154.7

d-gliaden igg >250

d-gliaden iga 14.9

?? What on earth does that mean? I can't get ahold of the doc, but the pressing question I have is if I have to continue making my child eat wheat for continued testing? As soon as she got the blood draw last week, she went back to refusing to eat any wheat, but I don't want to have to start another 6-8 week gluten diet from scratch if they will need to see continued gluten in her system for further testing.

 

The problem of testing celiac: even if the genetic is positive (I have 3 genes positive):

- you have to keep eating gluten, until blood tests positive but nowone really knows what amount of bread will get that value!

- you are getting sicker, but the dosage of gliadin in not there still for the doctors it is not celiac even if you have all the signs...

- the biopsy of the gut as to show atrophic vilositys if not (because you got gluten-free) it is not celiac!

So we have to be sicker and sicker even than it's an other problem...

Go to a Laboratory and do the genetic test HLA DQ2 and DQ8, or find a doctor that sendo you to make that blood test...and a doctor that knows the celiac disease well.....

 

Good Luck !

 

[deanna1ynne]

On 10/14/2021 at 9:01 AM, deanna1ynne said:

 

So I got results back from my three other kids today, and two more flagged high on some measures, but not super high, and I'm wondering - what other reasons are there for flagging these high? Is it always celiac related, or is it related to other auto-immune diseases, or is it possible that they're perfectly healthy, despite the high flags? 

With the same reference ranges as in the above picture (all should be less than 14.9), we got the following results
10 yo: 
<0.8
100.9
41.4
32.4

6 yo:
1.4
47.4
22.3
0.2

I have called the doc every day this week and have left messages every time, and still can't really get the answer to "What does this mean?" How often do you actually flag high in 2-3 markers, and still have a negative biopsy? What else might we be looking at?

[yuluyouyue]

28 minutes ago, deanna1ynne said:

So I got results back from my three other kids today, and two more flagged high on some measures, but not super high, and I'm wondering - what other reasons are there for flagging these high? Is it always celiac related, or is it related to other auto-immune diseases, or is it possible that they're perfectly healthy, despite the high flags? 

With the same reference ranges as in the above picture (all should be less than 14.9), we got the following results
10 yo: 
<0.8
100.9
41.4
32.4

6 yo:
1.4
47.4
22.3
0.2

I have called the doc every day this week and have left messages every time, and still can't really get the answer to "What does this mean?" How often do you actually flag high in 2-3 markers, and still have a negative biopsy? What else might we be looking at?

I think the results indicate celiac in both cases. As already mentioned, ttg iga is a very specific test for celiac, and with both children it's several times the upper limit. 

[deanna1ynne]

2 minutes ago, yuluyouyue said:

I think the results indicate celiac in both cases. As already mentioned, ttg iga is a very specific test for celiac, and with both children it's almost 3 times the upper limit. I am not sure what you mean by negative biopsy? Have they had it?

No, they haven't had biopsies. I guess I was just thinking about the not-very-fun prospect of a biopsy in these two, and.... gosh, I can't even come up with the right words to say what I was thinking.... I guess, since the numbers aren't nearly as high as for the child I originally posted about, I was maybe hoping that there's a chance they don't have celiac, still (i.e., how often does it occur that ttg iga is elevated but a biopsy gives a "not celiac" ruling? If it's a fair chance, maybe I could keep hoping for that?)

Writing it out makes me feel foolish. But I think, when I posted those extra two test results, I still had this hope that maybe they don't *really* have celiac disease, that maybe there was some other explanation, somehow...

[yuluyouyue]

2 minutes ago, deanna1ynne said:

No, they haven't had biopsies. I guess I was just thinking about the not-very-fun prospect of a biopsy in these two, and.... gosh, I can't even come up with the right words to say what I was thinking.... I guess, since the numbers aren't nearly as high as for the child I originally posted about, I was maybe hoping that there's a chance they don't have celiac, still (i.e., how often does it occur that ttg iga is elevated but a biopsy gives a "not celiac" ruling? If it's a fair chance, maybe I could keep hoping for that?)

Writing it out makes me feel foolish. But I think, when I posted those extra two test results, I still had this hope that maybe they don't *really* have celiac disease, that maybe there was some other explanation, somehow...

I think the chances of that are slim,  I am afraid. This is not borderline high, it's 100 and 47 (if I am reading it correctly), with positive above 15. So even 47 is considered considerably elevated.

[Eugenia Carvalho]

8 minutes ago, yuluyouyue said:

I think the results indicate celiac in both cases. As already mentioned, ttg iga is a very specific test for celiac, and with both children it's several times the upper limit. 

 

19 minutes ago, yuluyouyue said:

I think the results indicate celiac in both cases. As already mentioned, ttg iga is a very specific test for celiac, and with both children it's several times the upper limit. 

The genetic test and the duodenal biopy are the two other exams, but blood tests really indicate a good chance of having celiac. 

I am doing the same with my daugther and after 8 weeks eating gluten the blood tests were getting high but still lower than the maxixum value used for the laboratory, but she as all lot of symptoms (bone pain, hard stool, heating less, fragil nails, falling many times, dizziness...)

[trents]

deanna, look at it this way. Having more than one celiac in the house provides more incentive to move over to an entirely gluten-free household. That would be the best way to ensure those who are celiacs don't get CC.

[Eugenia Carvalho]

1 minute ago, Eugenia Carvalho said:

 

The genetic test and the duodenal biopy are the two other exams, but blood tests really indicate a good chance of having celiac. 

I am doing the same with my daugther and after 8 weeks eating gluten the blood tests were getting high but still lower than the maxixum value used for the laboratory, but she as all lot of symptoms (bone pain, hard stool, heating less, fragil nails, falling many times, dizziness...)

Being celiac isn't the end off the wold...getting treated is the best, if not all kinds of problems show up....

Being healthy without gluten is amazing, we learn how to manage food and labels, the secure foods and brands, after sometime it becomes normal life (without restaurants, without bakerys and coffee, ...) but we can still drink a bottle of water, a piece of fruit (raw)... being mutch more healthy...

[RMJ]

35 minutes ago, deanna1ynne said:

No, they haven't had biopsies. I guess I was just thinking about the not-very-fun prospect of a biopsy in these two, and.... gosh, I can't even come up with the right words to say what I was thinking.... I guess, since the numbers aren't nearly as high as for the child I originally posted about, I was maybe hoping that there's a chance they don't have celiac, still (i.e., how often does it occur that ttg iga is elevated but a biopsy gives a "not celiac" ruling? If it's a fair chance, maybe I could keep hoping for that?)

Writing it out makes me feel foolish. But I think, when I posted those extra two test results, I still had this hope that maybe they don't *really* have celiac disease, that maybe there was some other explanation, somehow...

You could think of it as being very lucky - their disease has been caught when they are young, before they have uncomfortable symptoms, probably before years of nutrient deficiencies, damage to intestines and other body systems.

[plumbago]

@deanna1ynne

My response is in relation to the screenshot you posted, not the part you typed in.

My notes say that if both deamidated gliadin tests (IgA and IgG) are high, almost certain to be celiac disease. Not sure I'm reading your screenshot correctly, but it appears that the deamidated gliadin IgG is very high and the deamidated gliadin IgA is at the upper limit of normal.

About the the tTG-IgA, which your screenshot indicates is very high, my notes say, "Not 100% specific: there are other causes of a positive test, including diabetes, heart failure, Crohn’s and others. Also, people who have celiac disease can get a negative result with this test. Machine-read."

In general, I concur with most everything others wrote on here, in that likely all signs point to celiac disease. Keep checking with your doctor, as you are so diligently doing!

Plumbago

[deanna1ynne]

Thank you all for being the voice of reason and talking me down. 

It's just really hard for me to process that I may have three children ages 10 and under with autoimmune diseases. It's not even "just" the diet/lifestyle part of dealing with celiac disease-- autoimmune diseases seem scary to me.  I will keep trying to get through with the doc. 

I also really appreciate the reminder that it's better to find out earlier/younger. In particular, I never, EVER would've tested my other three kids, had the first not refused to eat wheat products and subsequently tested positive. But the other three are all autistic, so don't always interpret their body cues correctly (i.e., they have a difficult time discerning whether they're hungry or tired, thirsty or cold, etc. with very unrelated -- to my mind -- sensations). So it's very likely that they may not have noticed or correlated any symptoms they experienced, the way my non-autistic kiddo (the one I initial posted about, who got tested first) did. And I can imagine it would've done them an awful lot of damage without them ever realizing what was going on in their bodies.

[knitty kitty]

@deanna1ynne,

You may find these articles and research studies interesting on the connection between vitamins and autism.

Relationship between Vitamin Deficiencies and Co-Occurring Symptoms in Autism Spectrum Disorder

https://pubmed.ncbi.nlm.nih.gov/32443822/

And...

Treatment of autism spectrum children with thiamine tetrahydrofurfuryl disulfide: a pilot study

https://pubmed.ncbi.nlm.nih.gov/12195231/

And...

Are High Folate and Vitamin B12 Linked to Low Thiamine in Autism and Other Disorders?

https://www.hormonesmatter.com/high-folate-vitamin-b12-low-thiamine-autism/

Hope this helps!

[Eugenia Carvalho]

4 hours ago, deanna1ynne said:

Thank you all for being the voice of reason and talking me down. 

It's just really hard for me to process that I may have three children ages 10 and under with autoimmune diseases. It's not even "just" the diet/lifestyle part of dealing with celiac disease-- autoimmune diseases seem scary to me.  I will keep trying to get through with the doc. 

I also really appreciate the reminder that it's better to find out earlier/younger. In particular, I never, EVER would've tested my other three kids, had the first not refused to eat wheat products and subsequently tested positive. But the other three are all autistic, so don't always interpret their body cues correctly (i.e., they have a difficult time discerning whether they're hungry or tired, thirsty or cold, etc. with very unrelated -- to my mind -- sensations). So it's very likely that they may not have noticed or correlated any symptoms they experienced, the way my non-autistic kiddo (the one I initial posted about, who got tested first) did. And I can imagine it would've done them an awful lot of damage without them ever realizing what was going on in their bodies.

The lack of vitamine absortion is the first sign of celiac, still blood can range not low enough for doctors. The blood as semi normal but we are not absorving in the gut..and there is not enough in the body...

It is always better treat celiac...

Be strong....

 

[trents]

17 hours ago, deanna1ynne said:

So I got results back from my three other kids today, and two more flagged high on some measures, but not super high, and I'm wondering - what other reasons are there for flagging these high? Is it always celiac related, or is it related to other auto-immune diseases, or is it possible that they're perfectly healthy, despite the high flags? 

With the same reference ranges as in the above picture (all should be less than 14.9), we got the following results
10 yo: 
<0.8
100.9
41.4
32.4

6 yo:
1.4
47.4
22.3
0.2

I have called the doc every day this week and have left messages every time, and still can't really get the answer to "What does this mean?" How often do you actually flag high in 2-3 markers, and still have a negative biopsy? What else might we be looking at?

deanna, did you and the children's father get tested as well? Your kids got those celiac genes from either of their parents or both and you don't have to have both genes to provide potential to develop celiac disease. Researchers have recently discovered a third gene that could be implicated in celiac disease so I'm not sure we know all there is to know yet about genes and celiac disease.

[deanna1ynne]

10 minutes ago, trents said:

deanna, did you and the children's father get tested as well? Your kids got those celiac genes from either of their parents or both and you don't have to have both genes to provide potential to develop celiac disease. Researchers have recently discovered a third gene that could be implicated in celiac disease so I'm not sure we know all there is to know yet about genes and celiac disease.

We have not had genetic testing done, but we did have a standard celiac panel done. Our results were both negative; mine were all under the minimums (<0.8 on every one), but hubby had his gliadin (deamidated) IgG & IgA both around 6, I think (where 15 is the cut-off, again). 

[Wheatwacked]

I think the evidence is overwhelming that your entire family will do better on a diet that does not include wheat, rye or barley.  Even if you are currently not testing positive now, look at all the people on this forum that make it past middle age before diagnosis, and then realize other symptoms they thought were normal suddening improve. It can be a family tradition, similar to Jews keeping kosher and muslim following halal. Those traditions also had their basis on health.  By not eating pork they avoided trichinosis.  I believe you mentioned you already grind your own wheat so you know the importance of all the essential vitamins and minerals, just taking it to the next, healthier level.  Wheat flour is mostly empty calories. By catching it before all the damage caused by vitamin deficiencies and autoimmune reactions you are ahead of the game. Your family's health, both mental and physical, will thank you later. At some point they may want to experiment; treat it as you would smoking or drinking.

http://nutrientlog.doodlesnotes.net/  This is my spreadsheet of most of the RDA and upper limits for adult male. Use it as a reference.

[deanna1ynne]

Thank you all very much! I think we're beginning to get a clearer picture of things and realize that it may be in the extended family much more than we realized! I was sitting and chatting with my in-laws last night about it, and asked if there was any celiac in the family, and they were adamant that no one has it.

But in the same conversation, I sat and listened to my mother in law tell me about her diabetes and how they think it was undiagnosed type 1, how my son's persistent anemia is just hereditary because she has had it really bad her whole life, how she has persistent GI issues, and how she loves to bake but doesn't eat it much and how she can't eat bread after a certain time of night because of what it does to her stomach and GI system. She seemed resistant to the idea of getting tested, but she's an adult and can make her own choices.

For now, we are moving forward with setting up appointments for next steps / further testing. Thank you for the articles on autism and nutrient deficits, the spreadsheet with RDA info (that's so detailed! I'm impressed!), and the encouragement. I will start to use up all our flour in the next weeks while we wait for our appointment at children's, and have started the journey to educate myself and my husband and my children.

I suppose I may start asking questions on other boards in this forum, since the preliminary evidence does strongly suggest our family should go gluten free! I really appreciate all of you "experienced" folks who still check in and are active on this "pre-diagnosis" board to help those of us who have no idea what we're even looking at when we first get these results back. 

[trents]

As you are discovering, deanna, there is so much ignorance about celiac disease, even in the medical community, that people will almost always get a negative answer from family members when asking if it runs in the family. Celiac disease is a medical new boy on the block, even though there is historical evidence that it has existed since antiquity. People just didn't know what was causing the symptoms. Most of what we now know about celiac disease has accumulated only since about the mid 1990's IMO. I mean who would have thunk that wheat, the staff of life around the world, could be bad for you? So they were looking at all the wrong causes for all those symptoms up until very recently and that phenomenon still persists, unfortunately.

[Eugenia Carvalho]

4 hours ago, trents said:

As you are discovering, deanna, there is so much ignorance about celiac disease, even in the medical community, that people will almost always get a negative answer from family members when asking if it runs in the family. Celiac disease is a medical new boy on the block, even though there is historical evidence that it has existed since antiquity. People just didn't know what was causing the symptoms. Most of what we now know about celiac disease has accumulated only since about the mid 1990's IMO. I mean who would have thunk that wheat, the staff of life around the world, could be bad for you? So they were looking at all the wrong causes for all those symptoms up until very recently and that phenomenon still persists, unfortunately.

I need to discover the name of the best doctor on celiac disease, can you help? Thank you...

[RMJ]

16 minutes ago, Eugenia Carvalho said:

I need to discover the name of the best doctor on celiac disease, can you help? Thank you...

Is this for a child or adult, and what country or part of the country?

[deanna1ynne]

On 10/23/2021 at 8:49 AM, deanna1ynne said:

 hubby had his gliadin (deamidated) IgG & IgA both around 6, I think (where 15 is the cut-off, again). 

I just thought of another question to ask related to this: Although my husband has "normal" numbers (as shown above), is there any reason for him to pursue further testing for celiac? I don't want to "see it everywhere," but as I've been reading about it (and seeing it in three children *and* his side of the family now, suggesting he's got the genes....), I've wondered about a number of his other struggles: low energy / fatigue, inflammation / back problems / nerve issues, some GI issues (needing to run for the bathroom at times), ADHD, smaller than all his brothers (by at least 3") and he is also autistic, like my children. If his ttg (both iga and igg) are both very low (less than the normal range, so flagged as "low") and his other two screens where right in the middle of the normal range, should I just rest assured that his other issues are probably unrelated to celiac? Or is there reason to look into further testing, would you say?

[knitty kitty]

Since your husband's symptoms are reflective of Celiac Disease, and some people have low antibodies, an endoscopy would be warranted.   

[trents]

Some would say that normal = zero. In other words, even small numbers indicate inflammation is going on. Have you and your husband had genetic testing done yet? Your hubby certainly has a lot of symptomatic phenomenon that is characteristic of celiac disease. But from the medical community's standpoint, his numbers don't warrant additional testing. I wonder if it wouldn't be wise to put him on a gluten free diet for a few months and see if his symptoms improve. Would he be open to that?

Edited October 24, 2021 by trents

[deanna1ynne]

20 minutes ago, trents said:

I wonder if it wouldn't be wise to put him on a gluten free diet for a few months and see if his symptoms improve. Would he be open to that?

Ha ha - I’m not sure he’d eat 100% gluten free even if his test came back overwhelmingly positive!! 😂 But I’ll link him this thread and let him read it and see what he says!