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Gluten Intolerant 4 1/2 Yr. Old


mom2kae

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mom2kae Rookie

My daughter is 4 1/2 & was found to be Gluten Intolerant & has been gluten-free since September of this year. Before going gluten-free she had the loose stools, stomach pain, & a ton more issues. Slowly but surely after going gluten-free she stopped having all of those problems & only complained that her tummy hurt after accidentally getting glutened & then eventually she'd have a runny stool. I'm super diligent about what she eats, makes sure that she always has HER food, no cross contamination, etc.

My question is that, at school last month before the holidays they gave her normal pizza by accident. They were having a party & instead of giving her her own pizza that I had provided, they gave her normal pizza. She didn't have any loose stools & didn't complain about her tummy hurting. & over the weekend she was given normal chicken nuggets by my wonderful FIL & only complained a bit about her tummy hurting but no loose stools.

I don't plan on putting her back on gluten but I'm wondering if this is normal. Is it because her stomach has healed & that the little gluten that she does get doesn't bother her as much?

I'm new to all of this & hoping to get some feedback!

Thanks!

Jenn


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Dixiebell Contributor

I have heard of a 'honeymoon' period in which the person thinks they have been 'healed' from celiac

and go back to gluten because they seem to have no symptoms.

mommida Enthusiast

In the old days the "honeymoon phase" used to fool doctors into believing that children could "outgrow" Celiac. We now know once a Celiac, always a Celiac. :rolleyes:

mom2kae Rookie

In the old days the "honeymoon phase" used to fool doctors into believing that children could "outgrow" Celiac. We now know once a Celiac, always a Celiac. :rolleyes:

Ok, so all of that is normal then! I started second guessing myself & the test results! I do see the difference in her body though so of course I knew that going & staying gluten-free is what is best for her!

Jenn

MacieMay Explorer

You say she has been found to be Glutent Intolerant not Celiac? Did her testing come back negative for Celiac? The reason I ask is because I have a toddler that has been diagnosed Glutent Intolerant (all of her Celiac testing came back negative, including gene testing). According to GI there is no way she can or will be Celiac. This makes me think that she could outgrow her intolerance. I've been following the forum hoping to find someone with a similar diagnosis.

mom2kae Rookie

You say she has been found to be Glutent Intolerant not Celiac? Did her testing come back negative for Celiac? The reason I ask is because I have a toddler that has been diagnosed Glutent Intolerant (all of her Celiac testing came back negative, including gene testing). According to GI there is no way she can or will be Celiac. This makes me think that she could outgrow her intolerance. I've been following the forum hoping to find someone with a similar diagnosis.

So far her testing has come back with just Gluten Intolerance, although her symptoms were all Celiac. She had(has) tooth enamel loss, major unexplained anemia, etc. along with her tummy issues. Her peds weren't the best & I had to fight them to even do the Celiac testing (go back to my prior posts for my whole story). She has been tested 2x & the first test was negative everything & the second test a year later came back with higher numbers & she was found Gluten Intolerant. I have yet to do any endoscopy or anything like that because I can see that she responds well to a gluten-free diet. I would like to eventually get the gene test done for her, myself & my husband but my husband was laid off last summer so I have to wait til we win the lottery or he gets a full time job...crossing my fingers & toes for either one :)

Does that sound similar to your child? We can exchange testing numbers :)

~Jenn

MacieMay Explorer

So far her testing has come back with just Gluten Intolerance, although her symptoms were all Celiac. She had(has) tooth enamel loss, major unexplained anemia, etc. along with her tummy issues. Her peds weren't the best & I had to fight them to even do the Celiac testing (go back to my prior posts for my whole story). She has been tested 2x & the first test was negative everything & the second test a year later came back with higher numbers & she was found Gluten Intolerant. I have yet to do any endoscopy or anything like that because I can see that she responds well to a gluten-free diet. I would like to eventually get the gene test done for her, myself & my husband but my husband was laid off last summer so I have to wait til we win the lottery or he gets a full time job...crossing my fingers & toes for either one :)

Does that sound similar to your child? We can exchange testing numbers :)

~Jenn

I'm sorry your husband has been laid off! I hope you win the lottery!! :)

This sounds familar as to what we had going on, minus the tooth enamel loss. She is too little. We have been stickly gluten-free since Sept. she was 20 months. We were on and off gluten all summer because of the celiac testing. That was terrible!! Her blood work wouldn't be a good comparison because she has another auto-immune disease it's called juvenile Dermatomyositis (JDM). I believe the JDM was triggered by her gluten-intolerance. I think her little immune system was in overdrive because it was rejecting gluten and then something else happen (either a virus, bug bite, or vaccine) and it REALLY wreaked havoc on her immune system and we ended up with this other disease. SUCKS!! She is gluten-free, on steroids and methotrexate (chemo-drug) and she is reponding to the treatment and doing really well. If you ever get the gene testing done private email me... I wonder if some day my daughter will be able to handle gluten once all this other stuff settles down. If she was gene positive I would say NO, she has Celiac. But she is negative! It is so weird! All Celiac symptoms but no Celiac. I wonder if maybe her GI system was just too immature to handle the gluten, like when babies reject milk protein, they grow out that. It's all very interesting and I hope that we get to the bottom of it...someday.


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mom2kae Rookie

I'm sorry your husband has been laid off! I hope you win the lottery!! :)

This sounds familar as to what we had going on, minus the tooth enamel loss. She is too little. We have been stickly gluten-free since Sept. she was 20 months. We were on and off gluten all summer because of the celiac testing. That was terrible!! Her blood work wouldn't be a good comparison because she has another auto-immune disease it's called juvenile Dermatomyositis (JDM). I believe the JDM was triggered by her gluten-intolerance. I think her little immune system was in overdrive because it was rejecting gluten and then something else happen (either a virus, bug bite, or vaccine) and it REALLY wreaked havoc on her immune system and we ended up with this other disease. SUCKS!! She is gluten-free, on steroids and methotrexate (chemo-drug) and she is reponding to the treatment and doing really well. If you ever get the gene testing done private email me... I wonder if some day my daughter will be able to handle gluten once all this other stuff settles down. If she was gene positive I would say NO, she has Celiac. But she is negative! It is so weird! All Celiac symptoms but no Celiac. I wonder if maybe her GI system was just too immature to handle the gluten, like when babies reject milk protein, they grow out that. It's all very interesting and I hope that we get to the bottom of it...someday.

Sounds like we started gluten-free at the same time! My daughter's immune system is really shot too. She started to get sick at 9 mos. with a UTI & dropped weight & % rapidly, by 12 mos. she tested + for TB of all things. None of us have it, only her. By 13-14 mos. her tooth enamel started to deteriorate, she started complaining about her tummy hurting, cramping, legs hurting, head hurting, eyes hurting, loose stools, constantly sick with a cold, flu, fevers, continued to drop weight, became anemic with no clear reason according to peds, countless testings on kidneys, bladders, etc. to find out why she kept getting UTI's, Cystic Fibrosis tests, bone growth xrays, pneumonia 2x, bronchitis, loss of hearing in one ear for about 2 mos., more & more antibiotics, etc. This is all from 9 mos.- 3 1/2 yrs.

We went to my other daughters'(DAN!) doctor whom we trust because he's not "by the book" & looks outside of what the doctors are taught in school & looks at herbs, yeast, etc. to figure things out. We are now fighting a yeast problem due to so much antibiotic she's been on & now she's taking iron (which her normal ped never recommended) & hopefully will start to become more & more healthy. I'm hoping that she outgrows the intolerance for her sake. She's still under 30 lbs. & will be 5 in May. She was born a chunky baby & was chunky until 9 mos., which surprisingly is 3 mos. after starting baby cereal...coincidence? I'm not so sure...Our peds definitely missed the boat in her case & I wish that I would've started to do research on my own earlier. :(

~J

Skylark Collaborator

If that were my child you couldn't pay me enough to give her gluten. It is hard to get antibody results in kids and the Dr. that didn't do a biopsy while she was still eating gluten really did you a disservice with those climbing antibody numbers. Without the biopsy you have to go by the symptoms and assume she is celiac. The climbing antibodies also show that her gluten reaction was escalating, which is bad. Simple gluten intolerance doesn't include tooth enamel defects, anemia, and "failure to thrive". Will it go away? Probably not because she is probably celiac.

I have a wide variety of reactions to wheat, anywhere from nothing to anxiety and fatigue to full on D and cramps. Oddly, it doesn't seem to depend on the amount of wheat. The one thing that's consistent is getting glutened repeatedly even with traces causes more and more problems.

MacieMay Explorer

Sounds like we started gluten-free at the same time! My daughter's immune system is really shot too. She started to get sick at 9 mos. with a UTI & dropped weight & % rapidly, by 12 mos. she tested + for TB of all things. None of us have it, only her. By 13-14 mos. her tooth enamel started to deteriorate, she started complaining about her tummy hurting, cramping, legs hurting, head hurting, eyes hurting, loose stools, constantly sick with a cold, flu, fevers, continued to drop weight, became anemic with no clear reason according to peds, countless testings on kidneys, bladders, etc. to find out why she kept getting UTI's, Cystic Fibrosis tests, bone growth xrays, pneumonia 2x, bronchitis, loss of hearing in one ear for about 2 mos., more & more antibiotics, etc. This is all from 9 mos.- 3 1/2 yrs.

We went to my other daughters'(DAN!) doctor whom we trust because he's not "by the book" & looks outside of what the doctors are taught in school & looks at herbs, yeast, etc. to figure things out. We are now fighting a yeast problem due to so much antibiotic she's been on & now she's taking iron (which her normal ped never recommended) & hopefully will start to become more & more healthy. I'm hoping that she outgrows the intolerance for her sake. She's still under 30 lbs. & will be 5 in May. She was born a chunky baby & was chunky until 9 mos., which surprisingly is 3 mos. after starting baby cereal...coincidence? I'm not so sure...Our peds definitely missed the boat in her case & I wish that I would've started to do research on my own earlier. :(

~J

That's about when my daughters problems started (9 mos). Looking back at some old labs she had a low IGG and was border line Vitamin D deficient and now that I think about it she had one positive ANA. I don't know what the low IGG means I would have to look it up. Her labs stabilized pretty quickly once going gluten-free. I would have to agree with Skylark in that it is probably likely your daughter is Celiac. Again, I would think that my daughter was celiac if it wasn't for the negative gene testing. I keep wondering what would of happened if I kept her on the gluten. Would she too ended up as "failure to thrive". I don't know!! Just as FYI... I pushed and pushed for EVERY test my daughter had! I was dismissed by our family Dr. on several occasions and I know he just did the tests to shut me up. Honestly, i am not sure where we would be now if I didn't do that. I'm very thankful we have good insurance and never had any problems. Good luck!! I hope your daughter is better soon.

MacieMay Explorer

If that were my child you couldn't pay me enough to give her gluten. It is hard to get antibody results in kids and the Dr. that didn't do a biopsy while she was still eating gluten really did you a disservice with those climbing antibody numbers. Without the biopsy you have to go by the symptoms and assume she is celiac. The climbing antibodies also show that her gluten reaction was escalating, which is bad. Simple gluten intolerance doesn't include tooth enamel defects, anemia, and "failure to thrive". Will it go away? Probably not because she is probably celiac.

I have a wide variety of reactions to wheat, anywhere from nothing to anxiety and fatigue to full on D and cramps. Oddly, it doesn't seem to depend on the amount of wheat. The one thing that's consistent is getting glutened repeatedly even with traces causes more and more problems.

Skylark... How do you know that a simple gluten intolerance wouldn't cause tooth enamel defects, anemia and "failure to thrive"? I think i've read on here that a gluten-intolerance can cause the same symptoms as Celiac minus the villi destruction. I've been reading and reading and trying to get some answers as to what was happening with my daughter. She had all the symptoms of Celiac except had ALL negative testing (two celiac panels, endoscopy biopsy, colonscopy biopsy, and gene). It is so strange!! I have other kids who are healthy. I'm not a new Mom. Something was wrong with her! I guess, I still can't believe that we didn't get that Celiac diagnosis and I'm left wondering what to do with a toddler with a gluten-intolerance diagnosis Do I worry about CC? Do I worry about play-doh? I have so many questions that I know no one will have the answer to. It so frustrating! I'm sure as she gets older we will get our answers. I just hate waiting!!

Skylark Collaborator

The scientific basis of gluten intolerance has not been worked out. I have a suspicion that in many celiac-like people it is simply celiac disease that is in too early a stage to diagnose with the crude tests we use right now. Besides, you said her blood panel went up enough for the doctors to diagnose gluten intolerance. What if you keep feeding her wheat and it goes all the way up to celiac levels? Developing celiac disease is a slow process in some people, not necessarily an all-or-none thing.

That's why if she were my child and the reaction to eating gluten was really clear, I would treat her as if she was celiac. I'm not sure I would worry as much about CC or play-doh (as long as she isn't eating it) but I would not knowingly feed her gluten foods. I think in 5-10 years we will have much better tests and a clearer understanding of the different ways celiac disease can look and the different forms of gluten intolerance. Until then, the gluten-free diet might keep her growing and on track! It will definitely keep the antibodies from continuing to climb, which is good. This is all my opinion from reading scientific literature, so take it as you will. B)

MacieMay Explorer

The scientific basis of gluten intolerance has not been worked out. I have a suspicion that in many celiac-like people it is simply celiac disease that is in too early a stage to diagnose with the crude tests we use right now. Besides, you said her blood panel went up enough for the doctors to diagnose gluten intolerance. What if you keep feeding her wheat and it goes all the way up to celiac levels? Developing celiac disease is a slow process in some people, not necessarily an all-or-none thing.

That's why if she were my child and the reaction to eating gluten was really clear, I would treat her as if she was celiac. I'm not sure I would worry as much about CC or play-doh (as long as she isn't eating it) but I would not knowingly feed her gluten foods. I think in 5-10 years we will have much better tests and a clearer understanding of the different ways celiac disease can look and the different forms of gluten intolerance. Until then, the gluten-free diet might keep her growing and on track! It will definitely keep the antibodies from continuing to climb, which is good. This is all my opinion from reading scientific literature, so take it as you will. B)

You would still treat them as Celiac even with negative gene testing? That's where I'm getting confused. GI said we never had to go back because there was no way she could be Celiac or become celiac. The gluten intolerance dx came from symptoms only, not blood work. That was Jenn the other mom from the post. I wonder what would of happened if I kept her on gluten, in my gut I think it could of turned into Celiac, but Dr. says NO!

sb2178 Enthusiast

Having celiac with a negative gene test is very rare, but not impossible. On the other hand, it's entirely possible that there is a constellation of gluten-related disorders that we don't understand. It definitely seems that with that level of illness, though, a long-term gluten-free diet is not a bad idea. Maybe when they are teens or twenties, they could do a gluten challenge again and see if symptoms or any celiac markers appear. However, I would stress that they should absolutely be followed closely for a very long time if you re-introduce it.

There is some lit showing that there are earlier markers of celiac disease, especially in kids/adults with some sort of positive blood work. So it's clearly a process, and probably one that takes years in many cases. I've read a couple of articles recently looking at:

1) young kids who were at risk, followed over several years and had elevated precursor biomarkers, then developed positive blood work (maybe biopsy? don't remember). Those markers were high something like two to three years prior to that actual diagnosis. in the non-celiacs, those markers were not elevated.

2) adults who had positive bloodwork, negative biopsy had almost identical biomarker profiles as biopsy-diagnosed celiac patients. Normal blood work had a very different biomarker profile from the biopsy-proven and bloods-only groups.

So, the weird blood work comes first, then the celiac panel shifts to abnormal, and finally then the villi get eaten. It seems that current celiac testing is basically like looking for stage four cancer instead of finding those pre-cancerous polyps. Hey, look! There's a huge tumor/no intestinal villi!

::::sigh::::

Skylark Collaborator

You would still treat them as Celiac even with negative gene testing? That's where I'm getting confused. GI said we never had to go back because there was no way she could be Celiac or become celiac. The gluten intolerance dx came from symptoms only, not blood work. That was Jenn the other mom from the post. I wonder what would of happened if I kept her on gluten, in my gut I think it could of turned into Celiac, but Dr. says NO!

Now I'm confused. Sorry, I missed who was posting what. Jenn does not have genetic results and I would personally handle a kid like that as celiac.

Yours is a little more confusing, although we have plenty of celiacs on the board who have so-called non-celiac genes. I guess I might ask for allergy testing first. Maybe it's an allergy, which would still mean a wheat-free diet. If that was negative I would go strict gluten-free for a few months, then relax about CC and so forth and see if she remains healthy? We know so little about gluten intolerance that really, really has the profile of celiac. It's very frustrating that more research isn't being done.

salexander421 Enthusiast

Having celiac with a negative gene test is very rare, but not impossible. On the other hand, it's entirely possible that there is a constellation of gluten-related disorders that we don't understand. It definitely seems that with that level of illness, though, a long-term gluten-free diet is not a bad idea. Maybe when they are teens or twenties, they could do a gluten challenge again and see if symptoms or any celiac markers appear. However, I would stress that they should absolutely be followed closely for a very long time if you re-introduce it.

There is some lit showing that there are earlier markers of celiac disease, especially in kids/adults with some sort of positive blood work. So it's clearly a process, and probably one that takes years in many cases. I've read a couple of articles recently looking at:

1) young kids who were at risk, followed over several years and had elevated precursor biomarkers, then developed positive blood work (maybe biopsy? don't remember). Those markers were high something like two to three years prior to that actual diagnosis. in the non-celiacs, those markers were not elevated.

2) adults who had positive bloodwork, negative biopsy had almost identical biomarker profiles as biopsy-diagnosed celiac patients. Normal blood work had a very different biomarker profile from the biopsy-proven and bloods-only groups.

So, the weird blood work comes first, then the celiac panel shifts to abnormal, and finally then the villi get eaten. It seems that current celiac testing is basically like looking for stage four cancer instead of finding those pre-cancerous polyps. Hey, look! There's a huge tumor/no intestinal villi!

::::sigh::::

I find this biomarker thing very interesting! Could you share the article/literature on this??

BooandBubba Newbie

Hi

I know this posting is from April 2010 and its now jan 2011 but can i pls add something.

My son seemed to be a perfectly healthy little boy until he got a UTI at 4months. I didn't think much of it at the time as he was healthy and gaining weight and have kidney reflux as child&in my 20's. He was put on profalaxis at night and thats when everythign started to go wrong for him, 2/3 wks later he was off his milk formula bottles, screaming if you put one near him. In end had to put him on baby juice as I tired everything and he was breaking my heart. that nov he got throat infection and just went down hill, wouldn't eat , wouldnt drink , his weight dropped to 2nd percile by Jan(weight went to just under 7kgs @11mths). He was only eating puree foods as I was trying to figure out myself what was making him scream at night(arching his back and just stiff as poker) and by Feb was in Hospital in Dublin(Im based in Rep of Ireland)getting endoscope done as none of the doctors could figure out what was wrong, he screamed during the nights for months up until this visit for the scope at start of march. They said they were 100% sure he was coeliac and we started the gluten free diet that afternoon.(he was also diagnosed Lactose Intolerant 2wks after the UTI)I had to learn quickly how to manage him but approx 2/3wks after starting the diet the night screaming had died down. Few days later I got notification that the scope was normal and he was not coeliac ?? this devastated me as i taught id finally got my answers as to what was wrong with my beautiful baby. My husband suffers alot with his stomach(he said IBS) but i dont believe this to be true I believe my husband is also Coeliac & lactose intolerant too - his mum has discribed to me the way he was when younger and described the night screaming and arching to def something in family.

Any way I sat for long time trying to figure out what to do and noticed that the foods my son refused to eat was the ones that contained gluten, so can only assume my son knew what was going on before anyone else? He is now gluten free since march 8th of 2010 and his weight has increasd to 10.2kgs(he been sick for 2wks with throat infection) so his weight drops rapidly when ill. Even though the scope came back normal theres no doubt in my mind he is coeliac (due to one doc saying that if he wasnt eating too much gluten-free foods before the scope it wouldnt show up) even the Peds doc who did the test saw no villi ?? so i can only assume for this that the child has to eat alot of gluten-free foods for something to show?? His an energetic lil boy who now runs , jumps and plays with his sister compared to the lil boy who could barely sit up this time last yr as he was so skinny his body seemed to hurt.

My question to you now is , my daughter who is 4 since sept , has issus with her teeth- the enamal

alot of tummy pains, floating pooh or sloppy pooh, itchy bum , alot of wind(sometimes can out her dad!) she is skinny and find getting her pants hard as she has skinny waist but leg doesn't fit, she never seems to put on weight or if she does looses it again, terrible tanturms - and i mean terrible she just screams, head aches and has gone off alot of food she used to eat, still likes he fruit but always wants the same dinners - chicken nugents , pizza , or bread , i have said this to my doc but she said just try her with gluten-free as my son is on it anyway.

Im wondering should i bring forward her peds apt in march to asap ? and try get her tested before i take her off the gluten-free foods as i would be forever wondering was she coeliac or gluten intolerant?

My son being lactose intolerant makes me think she is too as my husband cut out dairy too and finds he is better?

i had to fight alot for my son and hopfully i dont have to do that again with my daughter

she is not her happy self and want my baby back and being able to put on weight

what do you think ?? thank you

mushroom Proficient

Your post is a bit of a puzzlement with regard to your son. You state that the pediatrician who did the scope 'saw no villi'. If there were no villi, they were destroyed by the gluten; did you mean to say that he saw no damage to the villi, because that is what the scope and the biopsies are looking for? And if the results were negative then he had villi that were not damaged, and this would be in line with his not having consumed gluten for a considerable period before the scope was done. However, after the visual exam through the scope the doctors were convinced he had celiac disease?? The disease is usually fairly advanced to be evident on visual examination.

And lactose intolerance tends to indicate damage to the villi, because that's where the lactase enzyme is made that digests the lactose.

Have you actually viewed a copy of the biopsy report to verify what it says and that no mistake was made? (It can happen).

Anyway, assuming that the results are all in order, it is obvious that your son does not tolerate gluten, and thus may well fall into the category of non-celiac gluten intolerant, which in and of itself is just as serious as celiac disease. Now that he has been gluten free for ten months have you tried a little bit of lactose to see how he reacts? This would be an interesting test, because if his villi were damaged they may well have healed sufficiently by now for him to be able to digest lactose again.

As to your daughter, damage to tooth enamel is certainly a celiac symptom, as is stomach cramping, gas, burping, failure to thrive, loose stools,headaches, behaviour problems, etc. Why will your doctor not give her the celiac blood panel test before she goes gluten free? Now is the time to find out if the family actually are celiac, because it is hereditary and has to come from either you, your husband, or maybe both of you (each contributing a gene).

I would insist on getting a test now. There is no point in taking her gluten free and then deciding you would like her tested. Your family doctor can order the blood testing unless he has never treated your daughter, in which case you could set up an appt. for her??? or would the health system not allow this? If moving up her peds appt. is the only way to get the testing done, I would do it right now. I think it is an important issue for the whole family and might make your husband even consider a change of diet - that way you could take the whole family gluten free and simplify life a great deal.

Good luck and let us know how things go.

BooandBubba Newbie

Mushroom

I am happy you did reply, I was reading all your intolerances last night and was amazed at all the things your diet does not contain. Sorry if my post is confusing it was late and kinda get all up in fluster about my son when i talked about him.

The Peds after the scope came and told my husband and I that he could not see the villi and put him on the gluten free diet and told us at this point he was coeliac but after 4wks they sit down and review all cases and discuss the testing of any child done on same day as my son(yes we have a disaster of health system here) and in the biospy taken that day they could see the villi (i can't remember now if they said there was damage) my husband can't remember either. Peds did say this can happen as he was only 11mths at the time.But you have made a good point as to getting a copy of the report. I will ask for that today. The kids new GP has a copy of that report and will ask them for it.

Seeming him thrieve on the gluten-free diet still has me questioning the coeliac im constantly torn as to what is the ending problem wit him. he used to react terribly to things like meds , can only give him paracetamol if sick , he is allergic to penacillin but at the time of getting that medication he was in hospital and only on 3rd day did he react to it. Thankfully at start of Jan he got the MMR vaccine and did not react to it - any vaccines before this he would have either got sick or gone very sleepy.

He is on soya based products like milk , chesse and butter even though it was channel you get him to accept it for long while as he was afraid it was normal milk. anything resembly previous items , breads , crackers etc , we nearly had parties for when he ate them as it was such a struggle for him to just think the food wasn't going to make him sick.

He has gone from May of 2010 to Jan of 2011 without any sickness until 2 wks ago he got throat infection , which seems to be his main and only sickness he ever get and was always hospitalized for but this time i managed to keep him out of it. He used to be sick ever few wks. So i know his is lactose intolerant - that i know for sure and I believe it was since birth just with things i've been told along the way where signs but no one picked up on even though i used to say things to GP (the old one) but was told it was nothing

The health system along with government in Ireland is in shambles and to do anything , even get bloods done is a struggle. Unsure why the Gp thinks to go gluten-free and see , i guess its Irish thing, sure try it and see type of way but I am not on for that until i get some answers first. you even have to push the GP's here to get anything done.most think your just crazy parents thinking things up. which is way i left their previous GP.

Peds doctors only work out of the hospitals here and to get in with one of them you have to be referred by your GP. so its all very different here, they do take bloods but what they do with them heaven only knows as for asking for a scope to be done on her will be an up hill battle and i hate the taughts of keeping her on the gluten foods so they can test her.

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    • Scott Adams
      I’m so sorry you’re going through this—it sounds like you’ve been on a really challenging journey with your health. Your symptoms (stomach pains, bloating, low iron, joint pain, brain fog, etc.) do sound like they could be related to gluten sensitivity or another condition like non-celiac gluten sensitivity (NCGS). It’s interesting that your bloodwork hasn’t shown celiac markers, but the lymphocytosis in your duodenum could still point to some kind of immune response or irritation, even if it’s not classic celiac disease. The fact that your symptoms improved when you went gluten-free but returned when you reintroduced gluten (especially with the donut incident) is a pretty strong clue that gluten might be a trigger for you. It’s also worth noting that symptoms can be inconsistent, especially if your body is still healing or if there are other factors at play, like stress, cross-contamination, or other food intolerances. Do you have more info about your blood test results? Did they do a total IGA test as well? 
    • KDeL
      For years, I have dealt with various gluten related symptoms like stomach pains, bloating, IBS-C "ish" digestive issues, low iron, low Vit D, joint pains, brain fog, and more. I finally got a double scope and stomach looks clear, but I have some lymphocytosis of the duodenum. I am wondering if this sounds familiar to anyone, where I have not shown celiac red flags in bloodwork IGA tests. WIll be following up soon with GI Dr, but so far, my symptoms are intermittent. I go back and forth with gluten-free diet (especially this past year.... did two tests where the stomach pains I had went away without gluten in diet. HOWEVER, I added it back a third time and I didn't get the pains)   Anyway, I am so confused and scared to eat anything now because I recently had a few bites of a yeasty donut and I immediately got so sick. Any thoughts??
    • Peggy M
      Kroeger has quite a few Gluten free items.  Right now they are redoing my Kroeger store and are adding everything into the regular sections.  Since this was done some new ones have been added.  Publix and Ingles also have great selections. I actually shop Walmart and Food City to since prices on some items vary from store to store.
    • Scott Adams
      Sorry but I don't have specific recommendations for doctors, however, starting out with good multivitamins/minerals would make sense. You may want to get your doctor to screen you for where you different levels are now to help identify any that are low, but since you're newly diagnosed within the past year, supplementation is usually essential for most celiacs.
    • trents
      Yes, I can imagine. My celiac journey started with a rejection of a blood donation by the Red Cross when I was 37 because of elevated liver enzymes. I wasn't a drinker and my family doctor checked me for hepatitis and I was not overweight. No answers. I thought no more about it until six years later when I landed a job in a healthcare setting where I got annual CMP screenings as part of my benefits. The liver enzymes were continually elevated and creeping up every year, though they were never super high. My primary care doc had no clue. I got really worried as your liver is pretty important. I finally made an appointment with a GI doc myself and the first thing he did was test me for celiac disease. I was positive. That was in about 1996. After going on a gluten-free diet for three months the liver enzymes were back in normal range. Another lab that had gotten out of whack that has not returned to normal is albumin/total protein which are always a little on the low side. I don't know what that's about, if it's related to the liver or something else like leaky gut syndrome. But my doctors don't seem to be worried about it. One thing to realize is that celiac disease can onset at any stage of life. There is a genetic component but there is also an epigenetic component. That is, the genetic component is not deterministic. It only provides the potential. There needs also to be some health or environmental stressor to activate the latent gene potential. About 40% of the population have the genetic potential to develop celiac disease but only about 1% actually do.
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