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Boliviab

Could this be possible gluten allergy?

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I know its probably hard / impossible to say without proper tests but Im looking for opinions on this please.

I have been having a pain in my lower right abdomen for quite some times now , started probably about 10 to 12 months ago whilst training for a marathon, but only slightly on and off. It got progressively more regular and worse and about from about Aug/Sep onwards I was taking anti inflammatory meds and ibuprofen for the pain quite often. I wasnt really in a position to see a doctor as I was "inbetween several countries" aswell as in between living arrangements. I traveled in india for a bit and ended up taking antibiotics there as I thought it was maybe an infection. I did a course of anti parasite tablets thinking it might be that (and there was some but it didnt stop this pain). End of Oct the pain was quite bad one day and I had been getting quite a few fevers aswell I ended up going to ER in the UK and thinking it might be appendicitis but they tested , said it wasnt , that no signs of infection etc and sent me away. A few weeks after I returned to Bolivia to live and have been since and it was getting worse. I ended up going to hospital again new years day (hadnt drunk anything the night before as felt too bad ) and had a scan. They told me it was a gastric infection , there was swelling and signs of fatty liver stage 1. Gave me antibiotics to take and said cut out fatty things etc. It improved with the antibiotics and anti spasmodics I was given but also would come back on some days so Im thinking it cant be an infection when one day it is bad the next less so and then after that bad again (this is after finishing the ABs) - it must be something effecting it. 

I am veggie over 25 years and recently plant based vegan so overall my diet is pretty healthy anyway but I had never avoided gluten, Then we found some seitan vegan sausages for sale and tried them (and in previous days I had been eating gluten / seitan type stuff also) and I got bad again the next day which made me think it was maybe that and maybe it is an allergy to gluten. So i cut out all gluten and 2 days later in the evening (last night) I felt better than I had for ages , today it is a little bit of a swollen feeling there again (i might have had something with gluten by accident yesterday as wasnt sure of ingredient of some lentil burgers we ate) but not very bad. Also , i have been getting quite itchy all over with some red patches (since avoiding gluten) 

Do this sound like a potential gluten intolerance issue ? The intestine area pain is the bit im most wanting to find the reason for as it has been really effecting my life quality. Would that be a typical symptom of gluten intolerance , a dull aching to sharp throbbing type pain , often after eating in lower to mid right side , sometimes constipation and some improvement after going but not completely?

thanks for any help - I am actually hopeful that I might have found the cause because I dont believe the doctors here will find it themselves (this is from lots of experience here)

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6 minutes ago, Boliviab said:

I know its probably hard / impossible to say without proper tests but Im looking for opinions on this please.

I have been having a pain in my lower right abdomen for quite some times now , started probably about 10 to 12 months ago whilst training for a marathon, but only slightly on and off. It got progressively more regular and worse and about from about Aug/Sep onwards I was taking anti inflammatory meds and ibuprofen for the pain quite often. I wasnt really in a position to see a doctor as I was "inbetween several countries" aswell as in between living arrangements. I traveled in india for a bit and ended up taking antibiotics there as I thought it was maybe an infection. I did a course of anti parasite tablets thinking it might be that (and there was some but it didnt stop this pain). End of Oct the pain was quite bad one day and I had been getting quite a few fevers aswell I ended up going to ER in the UK and thinking it might be appendicitis but they tested , said it wasnt , that no signs of infection etc and sent me away. A few weeks after I returned to Bolivia to live and have been since and it was getting worse. I ended up going to hospital again new years day (hadnt drunk anything the night before as felt too bad ) and had a scan. They told me it was a gastric infection , there was swelling and signs of fatty liver stage 1. Gave me antibiotics to take and said cut out fatty things etc. It improved with the antibiotics and anti spasmodics I was given but also would come back on some days so Im thinking it cant be an infection when one day it is bad the next less so and then after that bad again (this is after finishing the ABs) - it must be something effecting it. 

I am veggie over 25 years and recently plant based vegan so overall my diet is pretty healthy anyway but I had never avoided gluten, Then we found some seitan vegan sausages for sale and tried them (and in previous days I had been eating gluten / seitan type stuff also) and I got bad again the next day which made me think it was maybe that and maybe it is an allergy to gluten. So i cut out all gluten and 2 days later in the evening (last night) I felt better than I had for ages , today it is a little bit of a swollen feeling there again (i might have had something with gluten by accident yesterday as wasnt sure of ingredient of some lentil burgers we ate) but not very bad. Also , i have been getting quite itchy all over with some red patches (since avoiding gluten) 

Do this sound like a potential gluten intolerance issue ? The intestine area pain is the bit im most wanting to find the reason for as it has been really effecting my life quality. Would that be a typical symptom of gluten intolerance , a dull aching to sharp throbbing type pain , often after eating in lower to mid right side , sometimes constipation and some improvement after going but not completely?

thanks for any help - I am actually hopeful that I might have found the cause because I dont believe the doctors here will find it themselves (this is from lots of experience here)

First - there is no such thing as a "gluten allergy".  Celiac is an autoimmune disease.  Just so you understand.

It could be Celiac or a different gluten intolerance.  I am guessing you aren't going to get tested for Celiac disease.  IF it were me, I would be more concerned that maybe there is still some sort of infection or parasite from the places you have been.  I think I would try to get a good work-up for that first.

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Karen's point about parasites etc is a good one. They can cause a lot of symptoms similar to celiac /ncgs as you probably know. 

At 11 I had my appendix removed following pain in the lower right side of my torso. On waking up the surgeon told me that it was actually ok, when I asked what caused the pain I think they said it was probably glandular - they didn't know. Later I got pains in the stomach, usually a dull ache although I could get a fierce stabbing pain there too. When I went gluten free those pains stopped. as did my chronic sciatic backache which Ive subsequently realised was probably due to inflammed tissues pressing on nerves.

I would ask the Bolivian doctors if they can get any celiac blood testing done. The standard ttg may not be beyond their labs. can't hurt to ask?

Give your diet my guess is you've had a lot of gluten for a long time. If its an issue for you expect a bumpy ride when removing it. 

Best of luck!

 

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Hi ,  i was thinking that an intolerance and allergy were about the same thing really but sorry if im wrong. I know celiac is an autoimmune disease but was thinking that is different again, more serious and was erring on the side of my possible issue not being that but more of the intolerance type. Clearly im just guessing though and dont know about this stuff , hence the posting for advice,

The problem with trying to get tested is that in bolivia there are very limited tests and doctors are unreliable so you have to rely on yourself to certain degree. I have heard of a test here and was planning on looking into that but it made sense to try to get some opinions and advice online first so Im in a better position to understand if any tests here are actually reliable enough.

I dont think there is an issue with travel parasites etc as I have already taken the medications thats would kill them like a course of albendazol and praziquantel and that was after a 2 week anti parasite cleanse. That did feel like it got rid of anything and the only issue I have been left with is this pain as described.

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11 minutes ago, Jmg said:

Karen's point about parasites etc is a good one. They can cause a lot of symptoms similar to celiac /ncgs as you probably know. 

At 11 I had my appendix removed following pain in the lower right side of my torso. On waking up the surgeon told me that it was actually ok, when I asked what caused the pain I think they said it was probably glandular - they didn't know. Later I got pains in the stomach, usually a dull ache although I could get a fierce stabbing pain there too. When I went gluten free those pains stopped. as did my chronic sciatic backache which Ive subsequently realised was probably due to inflammed tissues pressing on nerves.

I would ask the Bolivian doctors if they can get any celiac blood testing done. The standard ttg may not be beyond their labs. can't hurt to ask?

Give your diet my guess is you've had a lot of gluten for a long time. If its an issue for you expect a bumpy ride when removing it. 

Best of luck!

 

Yeah , i will look into getting tested - like you say there is no harm in it . What I found very interesting is the part where you say "Later I got pains in the stomach, usually a dull ache although I could get a fierce stabbing pain there too. When I went gluten free those pains stopped. as did my chronic sciatic backache which Ive subsequently realised was probably due to inflamed tissues pressing on nerves." - I also started to get chronic sciatic nerve pain on the right side over a similar time period and am wondering if its the same kind of thing. If I could solve both those things it would be life changing for me

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Celiac disease can be dormant for years til a strain/stress to the immune system makes it come out. Many of us have had this issues, your infection run in might have triggered the dormant genes for the disease if you had them. I would follow up with the testing, see about getting a full celiac blood panel if you can, you have to be eating gluten for 12 weeks daily prior to testing. http://www.cureceliacdisease.org/screening/

 

If not celiac it could be another food intolerance/sensitivity I suggest keeping a food diary and tracking what you eat, seasonings, how it is cooked etc. And how you feel later. Change up our diet more and look for patterns.  Here is stuff to read up on. https://www.mindbodygreen.com/articles/are-food-sensitivities-for-life

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3 hours ago, Boliviab said:

I also started to get chronic sciatic nerve pain on the right side over a similar time period and am wondering if its the same kind of thing. If I could solve both those things it would be life changing for me

I was completely floored by the realisation after I went gluten free of just how badly it had been affecting me. Before then I had all these different things which I was either barely coping with, ignoring, trying to pretend they weren't there etc. I went gluten free and suddenly all sorts of different things started to resolve. It blew my mind!

Try and get a blood test now before cutting it, its so much easier than going back on it for a gluten challenge. 

If the test is negative, don't assume its not an issue for you. My test was negative but I responded to the diet. 

Lots of help and advice here if you need it :)

Best of luck!

Matt

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2 minutes ago, Jmg said:

I was completely floored by the realisation after I went gluten free of just how badly it had been affecting me. Before then I had all these different things which I was either barely coping with, ignoring, trying to pretend they weren't there etc. I went gluten free and suddenly all sorts of different things started to resolve. It blew my mind!

Try and get a blood test now before cutting it, its so much easier than going back on it for a gluten challenge. 

If the test is negative, don't assume its not an issue for you. My test was negative but I responded to the diet. 

Lots of help and advice here if you need it :)

Best of luck!

Matt

yeah , i might try go tomorrow if I can find out - i literally stopped 2 days ago so unikely to be out of my system and if im due to go for a test tomorrow I could maybe try eating something witha bit of gluten in tonight or something to "top up" as it were

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1 minute ago, Boliviab said:

yeah , i might try go tomorrow if I can find out - i literally stopped 2 days ago so unikely to be out of my system and if im due to go for a test tomorrow I could maybe try eating something witha bit of gluten in tonight or something to "top up" as it were

A couple of days gluten-free probably won't matter.  but it doesn't work that way.  It isn't gluten in your system" they are testing for.  Gluten is not in your blood.  It is the antibodies your body makes to gluten that the blood test looks for.

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3 minutes ago, kareng said:

A couple of days gluten-free probably won't matter.  but it doesn't work that way.  It isn't gluten in your system" they are testing for.  Gluten is not in your blood.  It is the antibodies your body makes to gluten that the blood test looks for.

my thinking was that if I ate gluten tonight again , then the reaction would be there tomorrow not that there would be gluten for them to find exactly. So from what your saying It would make sense - i.e. if my body was going to react to gluten with antibodies then by eating gluten say tonight it would mean they would be in my system tomorrow. Now of course they could be in my system anyway from the gluten I ate a few days ago , but it would be more of a sure thing if id eaten it the day before I would have thought.

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2 minutes ago, Boliviab said:

my thinking was that if I ate gluten tonight again , then the reaction would be there tomorrow not that there would be gluten for them to find exactly. So from what your saying It would make sense - i.e. if my body was going to react to gluten with antibodies then by eating gluten say tonight it would mean they would be in my system tomorrow. Now of course they could be in my system anyway from the gluten I ate a few days ago , but it would be more of a sure thing if id eaten it the day before I would have thought.

So the simple explanation is - You eat gluten.  It travels along and gets to your small intestine.  For some reason, your small intestine feels it is an invader.  but instead of making antibodies that "attack" the gluten, the small intestine cells make antibodies that attack itself.  Sort of misguided, but that's what happens.  Now these antibodies are in the small intestines .  It can take weeks to make enough of them in the small intestine for them to make it to the blood stream in big enough numbers to show up on a Celiac blood test. 

So, one meal of gluten, after a long period gluten-free, probably wouldn't effect the level of antibodies in the blood.  

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7 minutes ago, kareng said:

So the simple explanation is - You eat gluten.  It travels along and gets to your small intestine.  For some reason, your small intestine feels it is an invader.  but instead of making antibodies that "attack" the gluten, the small intestine cells make antibodies that attack itself.  Sort of misguided, but that's what happens.  Now these antibodies are in the small intestines .  It can take weeks to make enough of them in the small intestine for them to make it to the blood stream in big enough numbers to show up on a Celiac blood test. 

So, one meal of gluten, after a long period gluten-free, probably wouldn't effect the level of antibodies in the blood.  

ok so eating gluten tonight wouldnt really have an effect then but i wouldnt likely still have them in my system after just 2 days of gluten free anyway. Basically the sooner the better I have the test really to have best chances.

On a seperate note - i have just seen that I have developed a rash all over my upper body. I felt a bit itchy yesterday but this is a full on red rash all over my torso , arms  part of my back . Legs feel itchy also but arent as red.Could this be an effect of stopping gluten for just 2 days? and if so would that happen  regardless of me being celiac / gluten intolerant or not or could it be an indication of something?

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2 minutes ago, Boliviab said:

ok so eating gluten tonight wouldnt really have an effect then but i wouldnt likely still have them in my system after just 2 days of gluten free anyway. Basically the sooner the better I have the test really to have best chances.

On a seperate note - i have just seen that I have developed a rash all over my upper body. I felt a bit itchy yesterday but this is a full on red rash all over my torso , arms  part of my back . Legs feel itchy also but arent as red.Could this be an effect of stopping gluten for just 2 days? and if so would that happen  regardless of me being celiac / gluten intolerant or not or could it be an indication of something?

I don't see that stopping gluten would cause a rash for anyone.

 

You might want to look at this site 

http://www.cureceliacdisease.org/

 

Edited by kareng

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31 minutes ago, Boliviab said:

eah , i might try go tomorrow if I can find out - i literally stopped 2 days ago so unikely to be out of my system and if im due to go for a test tomorrow I could maybe try eating something witha bit of gluten in tonight or something to "top up" as it were

If you only stopped 2 days ago no problem. Try and get a test arranged. 

if that can't happen, trial the diet and keep a journal tracking any response. I found that really helpful as some changes are subtle and gradual. 

 

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Hi,

DH (dermatitis herpetiformis) is an itchy rash caused by celiac disease.You should keep eating gluten until all celiac testing is completed.  Usually testing is a blood antibodies test first, followed by an endoscopy later.

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2 hours ago, Jmg said:

I was completely floored by the realisation after I went gluten free of just how badly it had been affecting me. Before then I had all these different things which I was either barely coping with, ignoring, trying to pretend they weren't there etc. I went gluten free and suddenly all sorts of different things started to resolve. It blew my mind!

Ditto, ditto, ditto!!!!!

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5 hours ago, Boliviab said:

ok so eating gluten tonight wouldnt really have an effect then but i wouldnt likely still have them in my system after just 2 days of gluten free anyway. Basically the sooner the better I have the test really to have best chances.

On a seperate note - i have just seen that I have developed a rash all over my upper body. I felt a bit itchy yesterday but this is a full on red rash all over my torso , arms  part of my back . Legs feel itchy also but arent as red.Could this be an effect of stopping gluten for just 2 days? and if so would that happen  regardless of me being celiac / gluten intolerant or not or could it be an indication of something?

BoliviaB,

DH rash can occur in Celiac's who reindtroduce wheat/gluten after a break from gluten.

However I want to go/see that the parasite route has also been exhausted.

The fever's (for most Celiac's anyway) are not typically but low grade inflammation is.

I had annual bronchitis issues and ear aches that went away after stopping gluten.

You did not say if your were a native Bolivian or not but if you are you  probably know about Chagas disease carried by the Kissing Bug.

A blood test will confirm that the Chagas parasite's were killed with your AB's round.

Though many AB's rounds can be as long as 2 months . . . not just two weeks for complete control.

I wonder if you have Chagas (possibly) and it is causing you colon problems.  GI problems can be a sign of advanced Chagas complications.

If you are having your blood drawn again it should be (re)checked.

In the US (since it is not endemic) as it is in Bolivia people typically find out if they have it (Chagas) by giving blood.

Chagas is considered a Neglected Tropical Disease (NTD) in the US but in Bolivia it should be ruled out as a possible cause of your fever(s) and GI problems.

https://www.cdc.gov/parasites/chagas/disease.html

quoting

"a dilated esophagus or colon, leading to difficulties with eating or passing stool" can be a sign of chagas.

if you hadn't mentioned parasites in your regimen I might not of mentioned it.  And in the UK if they didn't know your country of origin or your home country they might not of think to ask about it since it is a Neglected Tropical Disease and therefore had no reason to suspect Chagas to test your blood for it.

I was only aware of it because it has begun to show up in Texas and CNN run an article about it a couple of years ago.

http://www.cnn.com/2015/11/24/health/kissing-bugs-chagas-disease/index.html

 If you have an outdoor dog --- dog's can also contract Chagase disease from the bite of the Kissing Bug much like in the US dog's can get heart worm from a mosquito bite.

The CDC (the US health agency) says most people are assymptomatic but GI problems can be a severe sign of undiagnosed Chagas in about 30% of the population.

quoting again

"In people who have suppressed immune systems (for example, due to AIDS or chemotherapy), Chagas disease can reactivate with parasites found in the circulating blood. This occurrence can potentially cause severe disease." . . (NCGS and/or undiagnosed Celiac Disease (my words) could certaintly complicate someone's response to the Chagas parasite).

This might be higher in Bolivia. . . and probably is since Chagas is endemic to Bolivia.

The good news a blood test can help you find out if undidangosed Celiac or undiagnosed Chagas is causing your problems or if it is a complicated mix of the two.

**** this is not medical advice but it explains your fevers' better than Celiac (usuallY) but the rash defiantly could be a DH reaction to gluten.

I hope this is helpful.

2 Timothy 2:7 “Consider what I say; and the Lord give thee understanding in all things” this included.

posterboy by the grace of God,

ETA: Here is the FAQ link from the CDC on Blood Screening for Chagas disease in the US.

 https://www.cdc.gov/parasites/chagas/gen_info/screening.html

Again I hope this helpful.

 

 

Edited by Posterboy
To Add CDC's FAQs on Blood Screening for Chagas Disease in the US

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12 hours ago, Boliviab said:

When I went gluten free those pains stopped. as did my chronic sciatic backache which Ive subsequently realised was probably due to inflamed tissues pressing on nerves."

Me too. I still get transient lower back pain occasionally when my bladder or colon is full. It goes away immediately on voiding.

Regardless of anything other diseases you may have, being wheat free gives you relief so even if not Celiac you are Non Celiac Wheat Sensitive. There are over 200 symptoms that are improved with GFD gluten free diet. Google it. It is an impressive list. In any case, while it is good to have a diagnosis, there is only one treatment, do not eat wheat and deal with the inevitable malnutrition damage.(think Biafra babies 1970.) Most will improve over time. Whatever doesn't improve should be investigated to be safe, but realize that recovery may take years.

Wheat flour used should be limited to Paper Mache sculpture and library paste.:P

 

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3 hours ago, Wheatwacked said:

Wheat flour used should be limited to Paper Mache sculpture and library paste.

I would say no even then....it belongs in its own little corner in hell. We have had members get sick from cross contact touching and handling paper mache, playdough, and dry wall spackle containing wheat then touching their mouths, or food.....heck you can inhale the powder from the sanding spackle and have it get trapped in the mucus in you respiratory tract to run down your stomach and make you sick......has happened to a few on many occasions.

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    They are variously associated with the Department of Undiagnosed Celiac Disease More Common in Women and Girls International Health, Johns Hopkins School of Public Health, Baltimore, Maryland, United States of America; the Respiratory Epidemiology, Occupational Medicine and Public Health, National Heart and Lung Institute, Imperial College London, London, United Kingdom; the Section of Paediatrics, Department of Medicine, Imperial College London, London, United Kingdom; the Centre for Statistics in Medicine, University of Oxford, Oxford, United Kingdom; the Division of Epidemiology and Public Health, University of Nottingham, Nottingham, United Kingdom; the Centre of Evidence Based Dermatology, University of Nottingham, Nottingham, United Kingdom; and Stanford University in the USA.
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    They then selected studies, extracted data, and assessed bias risk. They evaluated data using the Grading of Recommendations Assessment, Development and Evaluation (GRADE). They found 260 original studies, covering 964,143 participants, of milk feeding, including 1 intervention trial of breastfeeding promotion, and 173 original studies, covering 542,672 participants, of other maternal or infant dietary exposures, including 80 trials of 26 maternal, 32 infant, or 22 combined interventions. 
    They found a high bias risk in nearly half of the more than 250 milk feeding studies and in about one-quarter of studies of other dietary exposures. Evidence from 19 intervention trials suggests that oral supplementation with probiotics during late pregnancy and lactation may reduce risk of eczema. 44 cases per 1,000; 95% CI 20–64), and 6 trials, suggest that fish oil supplementation during pregnancy and lactation may reduce risk of allergic sensitization to egg. GRADE certainty of these findings was moderate. 
    The team found less evidence, and low GRADE certainty, for claims that breastfeeding reduces eczema risk during infancy, that longer exclusive breastfeeding is associated with reduced type 1 diabetes mellitus, and that probiotics reduce risk of infants developing allergies to cow’s milk. 
    They found no evidence that dietary exposure to other factors, including prebiotic supplements, maternal allergenic food avoidance, and vitamin, mineral, fruit, and vegetable intake, influence risk of allergic or autoimmune disease. 
    Overall, the team’s findings support a connection between the mother’s diet and risk of immune-mediated diseases in the child. Maternal probiotic and fish oil supplementation may reduce risk of eczema and allergic sensitization to food, respectively.
    Stay tuned for more on diet during pregnancy and its role in celiac disease.
    Source:
    PLoS Med. 2018 Feb; 15(2): e1002507. doi:  10.1371/journal.pmed.1002507

    Jefferson Adams
    Celiac.com 07/17/2018 - What can fat soluble vitamin levels in newly diagnosed children tell us about celiac disease? A team of researchers recently assessed fat soluble vitamin levels in children diagnosed with newly celiac disease to determine whether vitamin levels needed to be assessed routinely in these patients during diagnosis.
    The researchers evaluated the symptoms of celiac patients in a newly diagnosed pediatric group and evaluated their fat soluble vitamin levels and intestinal biopsies, and then compared their vitamin levels with those of a healthy control group.
    The research team included Yavuz Tokgöz, Semiha Terlemez and Aslıhan Karul. They are variously affiliated with the Department of Pediatric Gastroenterology, Hepatology and Nutrition, the Department of Pediatrics, and the Department of Biochemistry at Adnan Menderes University Medical Faculty in Aydın, Turkey.
    The team evaluated 27 female, 25 male celiac patients, and an evenly divided group of 50 healthy control subjects. Patients averaged 9 years, and weighed 16.2 kg. The most common symptom in celiac patients was growth retardation, which was seen in 61.5%, with  abdominal pain next at 51.9%, and diarrhea, seen in 11.5%. Histological examination showed nearly half of the patients at grade Marsh 3B. 
    Vitamin A and vitamin D levels for celiac patients were significantly lower than the control group. Vitamin A and vitamin D deficiencies were significantly more common compared to healthy subjects. Nearly all of the celiac patients showed vitamin D insufficiency, while nearly 62% showed vitamin D deficiency. Nearly 33% of celiac patients showed vitamin A deficiency. 
    The team saw no deficiencies in vitamin E or vitamin K1 among celiac patients. In the healthy control group, vitamin D deficiency was seen in 2 (4%) patients, vitamin D insufficiency was determined in 9 (18%) patients. The team found normal levels of all other vitamins in the healthy group.
    Children with newly diagnosed celiac disease showed significantly reduced levels of vitamin D and A. The team recommends screening of vitamin A and D levels during diagnosis of these patients.
    Source:
    BMC Pediatrics

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