Confused with test results

[Dhruv]

, I m writing this email for my 18 years old son. We are resident in USA from past 18 years. My son is born in India, and I got him here when he was 3 months.

 

He has been playing cricket since he is 4 years. In 2015 we went to india for a vacation, there he had severe stomach pain for 10 days, we went to hospital and they found out gastro! He got all ok, since then he was having stomach pain when he eats bread, only bread not other wheat recipes. Hence we saw GI to make sure,they did bloodwork and diagnosis was celiac weak postive, so they decided to do endoscopy to make sure hence got endoscopy done, endoscopy came negative so Doctor did not inform us about celiac! Although its was shoing weak positive,But after that luckily he started having regular bowl moments which he was bit off earlier, then his appetite got better, he never complained about any stomach issues. Now he is 18 and 5"8 tall and a good athlete. He is a national cricket player,  He is left arm spinner and righty batsman. He works out daily, goes for practice and eats all healthy home made food, sometimes junk but very rare.

Since 2021 his billirubin came high in every annual bloodwork, so this year's his Doctor asked us to visit GI, billirubin is 1.4 not more in last 3 years. It's not that high high but out of range.

 

Now we went to GI, he ran multiple test and now his bloodwork shows celiac positive. (tTG)IgA >100 (tTG)IgG 57 is result reflectting on bloodwork. He is totally asymptomatic, no complaints touch wood. His GI is recommended to go for another endoscopy to make sure. Being mom i m very stressed now. He has national selection next week in California, and don't know what to do. They asked him to stop gluten, we will definitely do but I need correct guidance on few questions. 

 

1. If we do endoscopy and he comes negative , he will be positive or negative for celiac? I do not want to be mislead.

 

2. In endoscopy do they check small intestines health? If any damage over the period due to not following gluten free diet?

 

3. What can cause in long run if he fail to follow gluten free diet if he is positive for celiac?

 

4. It's very difficult to keep him off chapati as that's the most source for his carbs. He does not like rice that much. Being india it's very hard for me too ,to keep him away from chapati.(wheat tortila)

And at home I could still manage with bhakri/ or gluten free, but what when he goes on tour? 

 

5. Do you suggest endoscopy? I don't want to poke him if it's not required. 

 

[trents]

Welcome to the forum, @Dhruv!

Many with celiac disease are asymptomatic. We call them "silent" celiacs. That doesn't mean they will always be asymptomatic, however. It could just mean their physical constitutions are stronger and providing more resistance to damage. Eventually, it will catch up to them if they continue to consume gluten and they will develop symptoms and health problems. Elevated liver enzymes, by the way, are a classic symptom of celiac disease. This is what eventually led to my own diagnosis over 20 years ago. Back then this was not so well known.

To answer your questions:

1. If we do endoscopy and he comes negative , he will be positive or negative for celiac? I do not want to be mislead. Not necessarily but it is not likely that with his high tTG-IGA antibody count and elevated liver enzymes that there will be a negative biopsy.

 

2. In endoscopy do they check small intestines health? If any damage over the period due to not following gluten free diet? Yes and Yes.

 

3. What can cause in long run if he fail to follow gluten free diet if he is positive for celiac? Increasing damage to the lining of the small bowel which is where the nutrition in our food is absorbed. This usually leads to vitamin and nutrient malabsorption and medical problems related to that such as osteopenia/osteoporosis.

 

4. It's very difficult to keep him off chapati as that's the most source for his carbs. He does not like rice that much. Being india it's very hard for me too ,to keep him away from chapati.(wheat tortila) Difficult but it must be done if he has celiac disease.

And at home I could still manage with bhakri/ or gluten free, but what when he goes on tour? If he has celiac disease, you must find a way to do this. If your son does have celiac disease, he must buy into the gluten free diet or your your efforts to put that in place will not be effective. He is a young man now and he needs to make his own decisions. Educating him on the dangers of ignoring the need to eat gluten free if he has celiac disease will be important. Being consistent with the gluten free diet will be important

 

5. Do you suggest endoscopy? I don't want to poke him if it's not required. Yes. The endoscopy with biopsy is considered the gold standard of celiac disease diagnosis.

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When I consider your total narrative, it seems to me his body may be flirting with celiac disease. As he is healthy, young and fit, he may be fighting it off at times and going back and forth. But his high tTG-IGA score indicates there is a problem and a problem that is at least simmering. At this point in time, I would guess he is a silent celiac.

[Dhruv]

Thank you for your response! I really appreciate! Is 57 is too high?

[Dhruv]

Also do they check health of the outter lining of the small intestines in endoscopy which you mentioned? 

[trents]

1 minute ago, Dhruv said:

Thank you for your response! I really appreciate! Is 57 is too high?

Before I comment, please supply the ranges used by the lab for negative vs. positive for both the ttg(IGA) and the ttg(IGG). Different labs use different ranges. There is no industry standard. Please supply this in a new post as you likely will not be able to edit your existing post.

[trents]

7 minutes ago, Dhruv said:

Also do they check health of the outter lining of the small intestines in endoscopy which you mentioned? 

If the purpose of the endoscopy is to check for celiac disease they will take biopsies of the small bowel lining. But not all endoscopies are done for that purpose. You would need to be clear about the purpose of the endoscopy with the doctor ordering it.

[Dhruv]

Ok, so reference range for labcorp for (tTG) IgA Reference Interval: 0-3, Unit: U/mL( for my son it's  >100)

Transglutaminase (tTG) IgG Reference Interval: 0-5, Unit: U/mL( for my son is 57)

 

Thank you, I will ask doctor to order the correct test. Since he is on gluten due to unawakened will investigate throughly. 

[trents]

In the UK and some other nations there is an increasing tendency for doctors to forego the endoscopy/biopsy if the ttg(IGA) is 10x normal range or greater. Your son's score easily exceeds that. There is only a 5% chance that his elevated ttg(IGA) levels are caused by something other than celiac disease and not more than a 10% chance that his elevated ttg(igg) score is caused by something else. Please consider these odds.

 

Then there is the elevated liver enzyme issue which is found in about 20% of those with celiac disease. 

I think there is sufficient evidence to conclude that your son has celiac disease and I would talk to his physician about opting out of the endoscopy/biopsy. On the other hand, if you or your son demand more evidence, then pursue the endoscopy/biopsy.

[Wheatwacked]

Hello @Dhruv,

My 16 year old nephew was diagnosed two years.  That's not an easy age. This year the whole family has been diagnosed. You might consider getting yourself tested.  When my son was diagnosed his doctor suggested my wife and I should also get tested.  We declined and not eating gluten free is probably the biggest mistake of our lives.

Keep up with the cricket.  My son, diagnosed in 1976 at weaning, was on a swim team since 5.  Peer pressure will be a problem with the gluten free diet but his teammates can be supportive.

I think this article will help you understand the test results.

Are You Confused About Your Celiac Disease Lab Results?

While it may be 'silent' there are many symptoms of Celiac Disease that are mistakenly assumed to be 'growing up', or 'normal'.  They are not.  When I started gluten free diet at 63 I wrote down a list of 19 different symptoms that went away with just no gluten.  The rest was undoing vitamin and mineral malnutrition that developed over my life.

 

 

[trents]

Wheatwacked, did you mean to say, " . . . and not eating gluten is probably the biggest mistake of our lives"?

[Dhruv]

@trents i m just confused as his billirubin is high 1.4 and EVB virus detected. Not sure if that's causing his Igg Iga numbers high or hr has celiac.  This whole process made us stress. Not dr is good enough here to get to the conclusion,  definitely i will consult in india, as here medical is very poor,  only cure is good, diagnosis process is pathetic! They should guide is better way, why his billi is high, why EVB VIRUS test detected positive,  how it's different from being Asian and American genes, eating habits and overall. 

[Dhruv]

@Wheatwackedcan you elaborate your systems and after how many years of eating gluten you and your family get dignos with celiac,  did you do endoscopy? What was the state of you small intestines or lining, it casued any major damage is long run? In india dr don't even test for celiac as whaet is part of indian food and we have been eating since birth. Hence I don't trust doctors here.

[trents]

The onset of celiac disease can happen at any stage of life. And I don't think wheat is any less a part of the typical American diet than it is in India. But it may be true that we probably introduce wheat later into the diet after birth in the West than is common in India. I'm not sure it is accurate to say that having Asian genes affects the diagnostic process. Celiac disease is not uncommon in India. We have lots of Indian celiacs who have participated in our forum. It probably is true that the recognition of celiac disease in India by the medical profession happened later than it did in the West but I think it has become just as common in India as it has here. 

[trents]

http://celiacindia.org.in/about-celiac-disease/celiac-disease/prevalence/

The incidence of celiac disease in India is the same as in the West. There has been a dramatic increase in the diagnosis of celiac disease in the past 30 or so years in developed countries. This has coincided with the development of good diagnostic tools and greater awareness and may also indicate higher rates of development of the condition due to changes in diet, environmental toxins, overuse of antibiotics and whatever things contribute to gut dysbiosis in our modern lifestyles. Some people believe that hybridization of wheat to produce varieties that are more drought and disease resistant and contain more gluten has also contributed to the problem.

Edited November 6 by trents

[Dhruv]

@trentsvery well said. But in india we mostly use pure form of wheat,  like wheat flour or Samoline than refined all purpospurpose Flour, which is very unhealthy. Over the period since atmosphere changes, globe warming definitely affecting whole farming concepts. I m not worried about how my child go off on wheat but why he can't eat once in a while his favorite food? I m also worried to take him completely off from wheat as that may make him more sensitive and cause any other diseases. No doctor has answer of my questions. How many people in this country or india suffer from more dangerous stomach diseases? If you see nothing is good for our body, drinking alcohol, medicines, smoking,  spicy food, green chilli, still we eat, and specially in India,  we eat a lot of spice everyday, our internal body organs had made that way, that's not the case anywhere else in the world we have more than 261 states if india , each state/city has different food, use different ingredients, ultimately it's human body, but it's the way how you develop your body and for which food. Cutting off on staple good is not a good idea, definitely we can decrease the quantity,  if i put my son only on rice, he may get sugar, that means one or other problem. How he can get his energy without eating carbs. I believe everything in small quantity is good for your health. Overdue or stopping can make more complications. When I send my sons reports to india , doctor said he is just above normal,  and don't think about it as if you eat wheat,  you will come positive for this test. I m just gathering opinions to make best decision. We asked him to keep a balance, once in while eating will never be harmful! 

[trents]

For a person with celiac disease, every time wheat is consumed it generates inflammation in the lining of the small intestine. This is not just an irritation reaction like a hot spice might produce, it is an autoimmune reaction where the body is attacking its own tissues. If this happens frequently over time it will trash the villous lining of his small bowel and inhibit his ability to absorb nutrients from his food since that is the portion of the intestinal track where all the nutrition from the food we eat is absorbed.

Carbs can be had easily apart from wheat or rice. Potatoes for instance or any grain like corn or sorghum. 

It is not always true that everything in small quantity is good for your health. What is true is that there are some things that are harmful in any quantity for some people.

Yes, it is hard to believe that something considered to be a staple by most people groups around the world can be harmful. That has always been the resistance the celiac community has faced in getting people to accept the fact then when you have celiac disease you must absolutely avoid wheat, barley and rye. Many people are cynical, even still some doctors, and see gluten intolerance as the latest "fad" disease. 

Your son's ttg(IGA) score is greater than 100 when normal cut off is 3. I do not understand how your physician in India can dismiss that. This particular antibody is very specific for celiac disease and would not be elevated due to Epstein Barr virus. This will likely offend you but I believe you are in denial about the fact that your son has celiac disease. Having this disorder just does not fit in with either his plans for his life or your plans for his life as his parent. But is anything more important than guarding your son's health?

[Dhruv]

@trents I really appreciate your valuable feedback, absolutabsolutely's health is my utmost priority as a parent and i will do whatever it will take me to, i m not in denial mode at all, i m just not getting that why doctor has no answers of my questions.  Doctors here behind me to do endoscopy to confirm,  if it's very high than normal then why they are behind me to test. Even his physician here said let him eat once in a while, and will respect him only if symptoms occur. So whole process has made me upset. But will keep your feedback in mind. Thank you very much.

[trents]

Only if symptoms occur? But what if your son is a silent celiac? And let him eat once in a while? How often is once in a while? And if only very occasionally, what is the benefit of it from a carb standpoint? There is some inconsistency here. And if more often than occasionally, it will do damage to his small bowel lining that will eventually cause health deterioration. And it is also true that once you begin to withdraw gluten you become more sensitive to gluten exposure when it happens and it can even make you quite ill, like nausea and vomiting. You lose tolerance for it. 

I don't think any of the leaders on this forum who have lived with celiac disease for years and learned about it for years would advice occasional indulgence in gluten for anyone who has celiac disease. 

Just some things for you to think about but I think you will do what you want to do.

[Wheatwacked]

8 hours ago, trents said:

Wheatwacked, did you mean to say, " . . . and not eating gluten is probably the biggest mistake of our lives"

8 hours ago, Wheatwacked said:

not eating gluten free is probably the biggest mistake

Nope.  My life would have been better without gluten.  Unfortunately I was in denial until 63 years old.  I was a colicky baby.  Should have started gluten free then but in 1951 you just outgrew it.  But really you don't. They convince you that there is something wrong with you, instead of there is something wrong with the food they sell.

[Dhruv]

@trents I absolutely understand the perspective of getting off completely from wheat,  but sometimes situation may occur that you won't have choice to eat other than wheat,  my son travels a lot, since they travel in team, it's not easy to go out and find him a gluten free every single time! I have seen, even in NJ I m struggling to find out gluten free stuff, in this country we don't get fresh food in stores, other day i saw gluten free bread so hard that will never feel to eat it! Once in while means once in a while, when there is no absolute option. Here all goes by book, there is no enough scientific research done yet on eating gluten with celiac,  everyone has there own narrative,  only it being said don't eat wheat, but Noone has come up with the experience. And moreover my sons diagnosis is yet to define, whether he has celiac or NCGS. last time his endoscopy came negative hence doctor did not bother to tell us. I hope this time it will be the same case. We are figuring out why his billirubin is high, may be that could be the reason his igg iga test is high, will get check on all and come to the conclusion. My son and us is absolutely fine not eating gluten, but one can't guarantee that every time they will get the gluten free food other than home. I also don't trust under the table of "gluten free products" have see people still have same iga igg count even after following the diet. This is all learnings, will keep him under observation and go through the regular testing to find out how his body reacts to what.  I may sound like a fool, but medical is scam in US, hence i would consult doctors in India. 14 years ago they have announced i had a breast cancer, which was not, since then I don't trust medical system here.

[Wheatwacked]

On 11/6/2024 at 1:57 PM, Dhruv said:

other day i saw gluten free bread so hard that will never feel to eat it!

There is plenty of gluten food that is unplatable also.

The trouble in restaurants is that wheat,  like the Frank's Hot Sauce commercial; "They throw that bleep on everything."

In my opinion, the underlying problem is compromised immune system due to vitamin D deficiency and Green Revolution modern wheat.  50% of the industrialized world are vitamin D deficient and we are urged to avoid sun and limit oral vitamin D intake to the minimum.   Non Celiac Gluten Sensitivity became an official diagnosis only 10 years after modern wheat was marketed.

[DebJ14]

If your son does go completely gluten free, then he will find that occasional consumption of gluten will result in a stronger reaction.  The longer you are off of it, the worse the reaction.  When I was first diagnosed I would break out in a rash or get a headache if I consumed gluten.  As time went on I would get diarrhea and vomit profusely.  The time between accidental gluten consumption and the ss** show starting gets smaller and smaller.  I always know where the bathroom is wherever I am because even when they claim the food is gluten free, it may not be and so many people think a little can't hurt you.

I have a 20 year old grandson and an 18 year  old, both celiacs, and both athletes.  The trick to always having gluten free food is to prepare ahead of time and they always bring something gluten-free with them. My family  has adopted the motto, "When in doubt, do without."  Otherwise the consequences can be dire. We have 5 Celiacs in the family and 2 with NSGS.  Those with NSGS also have strong reactions the longer they are off of gluten.

[Dhruv]

@DebJ14 my son is a symptomatic. And his all bloodwork looks good so far. Here there is no treatment for this in allopathic, but back in india , there is a homeopathic treatment which makes people immune to wheat for celiac. Have known doctors whos given best treatment to the patinents and they are back to gluten,  we are going india , as it's not sure if my son has a celiac or something else. Diagnosis is sucks here, every doctor has own narrative and every lab has own counts. I don't trust medical here. I have been working in healthcare administration past 10 yrs and can tell yoh how miserable it is, every dr works here to get money from the insurance,  nobody really cares what patients are going though,  this is the big problem of this country. None of the doctor has given me an example of the damage being caused gluten indulge.