3 Y.o Daughters Iga Levels Are Low

[Hailiesmom08]

To give you a little background I have a 3 1/2 year old daughter that my husband and I believe to have celiac. Since birth she has had stomach issues and was diagnosed with a dairy intolerance and acid reflux at 4 months old. Also she has had a dry looking flaky patch on her head since two weeks old this was diagnosed as a yeast infection on her head she was given medicine but once meds were gone the dry spot would reappear on her head.When it came back we tried a topical medicine and it helped but didn't make it go away. At 3 years old now she STILL has the dry patch which you can see more than the eye can see if you shine a black light on it. We were told to put her on neocate formula which was the best thing we could have ever done, we finally had a happy healthy baby. Until she was old enough to start eating big girl foods... Her behavior took a turn for the worse, fits were a daily battle some days her outbursts would be so bad I swear she didn't even realize what she was doing. We could offer her to put on her fav movie and that wouldn't even snap her out of it. My husband and I began to wonder if our precious little girl was autistic. This continued with no answers until shortly after her 3rd Birthday. We all had pizza one night and I noticed her poop after eating pizza was very runny and sticky. I told my husband I really believed she couldn't tolerate gluten so we decided to cut all gluten out of her diet to see if her bowels would change. Three days after going gluten free we noticed a huge change in her behavior and her poops started looking healthy! Until months later she did a sleep over at grandmas house. Grandma took her to get sorbet which is dairy free but put gummy bears on top which contained gluten. My poor little girl had runny uncontrollable poop for days after being glutened...she wasn't even able to make it to the bathroom

We got her diet back on track but I noticed she still had these nasty sticky poos every once and awhile and a VERY bloated belly. I decided enough guessing let's get them to do blood work to see what all she isn't able to handle. We got the test results back Tuesday. She tested positive for IGA which is an immune deficiency which voids out the results for celiacs disease. Normal IGA levels are between 24-121 I believe and her's read 0.86 Her doctor recommended us getting her into a GI doctor so she can get the biopsy done. I did some research and read that 30% of people with IGA also have celiac. I guess my question is how many of you out there have IGA and celiac and does anyone out there have any knowledge on what the dry spots on her head could be??? This is still unknown. I'm really just hoping and praying this GI doc can give us some answers tomorrow. My daughter is so use to her stomach hurting she thinks its normal so she never tells us when it hurts but i can tell when its really bothering her bc she gets pail and doesn't want to do anything but watch a movie. Any input would be much appreciated!

Edited to add we had to give our daughter gluten to run the blood work and it broke our hearts. We don't want to have to put her through that again. She is on a gluten free diet and will be seeing the GI specialist tomorrow. Does anyone know if GI docs will do the biopsy without having the child consume gluten?

[Roda]

How long has she been gluten free? There is a good chance that her biopsy will be negative since she has been gluten free. However, if you are wanting the scope it can look for other possible problems also and if she has a lot of damage it still might show. My oldest son has had negative celiac blood work three times. I took him to a GI in August and she scoped/biopsied him based on his symptoms and the fact I wanted it done. It was negative also, but I put him gluten free after anyway.

[Hailiesmom08]

Thank you for your response and mentioning the scope, I will def be requesting them to do the scope along with the biopsy. She has been gluten free for 6 months now. In the 6 months for the most part she has been pretty healthy. Not as gassy, not as bloated but it seems every now and again something is still bothering her. I didn't realize gluten was in play doh and was playing with it at least once every two weeks.

Also we would go out to eat a pei wei and they have a gluten free menu we would get a gluten free dairy free meal which is rice and chicken but yet it still seemed to bother her. Cross contamination possibly? Maybe too much MSG for her system to handle? IDK

This is all so new to me, i'd also like to know how do we know if we need to get new kitchen supplies such as a toaster new wooden spoons ect. She never tells us when she hurts so idk exactly how sensitive she is.

[M0Mto3]

I may not be the best person to describe this, but I am going to try. IgA is a type of antibody. The total IgA level is tested when bloodwork is done for Celiacs to determine if the person creates enough antibodies to do the IgA type of antibody testing. Any IgA testing on your daughter would not be valid because she is IgA deficient. So, in order to test for Celiac's they would need to do the IgG testing. This is not as specific for Celiac's as the IgA testing. Right now, they can't do any bloodwork for Celiac's because your daughter is gluten free, so she would not be reacting against gluten and would not have positive bloodwork. So, what the GI doc will probably want is to have her back on gluten for 2-3 months and will do the bloodwork for Celiac's. My daughter's GI doc would not do the scope without positive bloodwork first. If your daughter has been gluten free for 6 months then her endoscopy would be negative. If she has Celiac's then the damage to the intestine will be healed and the endoscopy would be useless.

Not to dissuade you, but I put my daughter (who is only 17 months old now) back on a 2 month gluten trial. Despite all of the symptoms of Celiac's her bloodwork still was negative. The trial was awful. Her weight percentage dropped to the lowest it has ever been. She was miserable and so were all of us. Two months later we have only confirmed what we already know. She does not tolerate gluten. The GI doc diagnosed her with gluten sensitivity. That means one day he will want us to try again. I know that I can never poison her like that again. So, for now she is not officially diagnosed and who knows if she ever will be. For my daughter the gluten trial was not worth it. I would talk to the GI doc and look very seriously at if and when the best time is to put your daughter back on gluten. For us, it was not worth it. The only thing it accomplished is convicing the ped and the GI doc that she can't tolerate gluten. We already knew that.

[Hailiesmom08]

I may not be the best person to describe this, but I am going to try. IgA is a type of antibody. The total IgA level is tested when bloodwork is done for Celiacs to determine if the person creates enough antibodies to do the IgA type of antibody testing. Any IgA testing on your daughter would not be valid because she is IgA deficient. So, in order to test for Celiac's they would need to do the IgG testing. This is not as specific for Celiac's as the IgA testing. Right now, they can't do any bloodwork for Celiac's because your daughter is gluten free, so she would not be reacting against gluten and would not have positive bloodwork. So, what the GI doc will probably want is to have her back on gluten for 2-3 months and will do the bloodwork for Celiac's. My daughter's GI doc would not do the scope without positive bloodwork first. If your daughter has been gluten free for 6 months then her endoscopy would be negative. If she has Celiac's then the damage to the intestine will be healed and the endoscopy would be useless.

Not to dissuade you, but I put my daughter (who is only 17 months old now) back on a 2 month gluten trial. Despite all of the symptoms of Celiac's her bloodwork still was negative. The trial was awful. Her weight percentage dropped to the lowest it has ever been. She was miserable and so were all of us. Two months later we have only confirmed what we already know. She does not tolerate gluten. The GI doc diagnosed her with gluten sensitivity. That means one day he will want us to try again. I know that I can never poison her like that again. So, for now she is not officially diagnosed and who knows if she ever will be. For my daughter the gluten trial was not worth it. I would talk to the GI doc and look very seriously at if and when the best time is to put your daughter back on gluten. For us, it was not worth it. The only thing it accomplished is convicing the ped and the GI doc that she can't tolerate gluten. We already knew that.

I'm so sorry to hear that your family went through that It is so heartbreaking to know that you are feeding your child something that is hurting them. My husband and I are are new to this but were pretty certain that the GI doc would tell us to put her on gluten to do the biopsy and other testing. We have decided not to put her through this, we did for two days to get the blood work only to come back negative and it isn't worth it at all. Regardless of what any tests say we know our daughter can't tolerate gluten and refuse to poison her body with it again. I guess i'm hoping for the GI doc to give me more knowledge/insight on if there may be any other underlying issues. We know she can't handle dairy, we know she can't handle gluten and though we have eliminated these items I feel there is still something else going on in her digestive track. She isn't able to digest beans and her body can't handle cooking oils such as olive oil, canola oil ect. My question is why?

I'm really hoping to get some answers tomorrow.

[M0Mto3]

Praying you do get some answers. Many times as the gut is healing from gluten issues there are other intolerances that may eventually go away. The other thing to look really closely at is cross contamination. Including condiments that may have crumbs in them, the toaster, old pots and pans, etc, etc.

It takes months for the antibodies to build in the system to get a positive diagnosis for Celiac's via bloodwork. The statistic that gets rattled off is 4 pieces of bread a day for 3 months in order to see positive results on the bloodwork. It sounds like your ped is about as knowledgable as mine who originally told me that my daughter didn't have to be on gluten to get positive bloodwork. Two days of gluten consumption would not give her a positive result at all.

I was questioning the importance of a diagnosis a while back and this was shared with me.

Open Original Shared Link

It sounds like LOs like ours might one day be able to be diagnosed without doing the gluten challenge. It doesn't sound like Dr's are using this yet, but maybe one day.

[Roda]

Well if she has been gluten free for 6 months the biopsy is "likely" to come back negative. From what you describe, it sounds like to me that she is getting cross contaminated. Here are some of the things I did after I was diagnosed that I shared on another topic(I'm just going to copy and paste it here). There is even less gluten in the house since my boys went gluten free.

Just to put it out there are you preventing cross contamination the best you can when you cook for her? Are you maintaining a shared kitchen or did the the whole house go gluten free?

I do maintain a shared household but here was a few things(O.K. alot ) I did after I was diagnosed.

-went through the fridge/pantry and donated the gluten items to the local food bank what the others in the house wouldn't eat

-made a dedicated shelf in the pantry, drawer in the fridge and a section of the counter for the gluten things. The rest was dedicated gluten free.

-bought another toaster and pasta strainer for gluten free only

-replace any scratched or worn cookware and plastic ware.

-replaced all of my bakeware except the glass/pyrex pans.

-relaced my cutting board, wooden spoons and waffle iron.

-replaced spice/herbs and baking needs(sugar, baking soda, etc)that may have had cross contamination

-got rid of all regular flour/baking mixes and only bake gluten free. The flour can stay airborn and settle back down and contaminate the counters. If the gluten eaters wanted something I couldn't/wouldn't make they went to the bakery.

-all shared meals were prepared gluten free. I have no desire to cook two separate meals.

-when anyone ate gluten they had to have it on a plate and not walk around the house touching things. They had to wash when they were done.

-made sure my personal care products were gluten free(shampoo, conditioner, hand lotion, makeup, lip balm etc.)

-we do share things like peanut butter, lunch meat and cheese. Gluten eater(hubby) takes out what he wants before he touches his bread.

[Hailiesmom08]

Thanks so much for all of the advice! We have taken the food aspect of this very seriously, if it doesn't say certified gluten-free we don't buy it. I however didn't realize the cross contamination was just as important. We do have a gluten-free shelf in our pantry even a gluten-free shelf in our freezer. Looks like the next step is assigning the gluten-free counter and buying new kitchen supplies.

I now know how cross contamination can affect one...

I have been having stomach issues for about 5 months now. I have been excusing it thinkin it may be stress one excuse after another. Until I took my daughter in for her doc appt it never crossed my mind it could be celiac. My daughters doc said it is genetic so if she has it I may... Or my husband. Husband has a tummy of steal and my stomach well it hurts... Hmmm noooo way I told myself. The next day I weighed myself for the first time in about a month and I have lost 10lbs. I haven't been working out and my diet hasn't changed (until 5 days ago) then it hits me....wow I may really have a gluten issue.

So now I have been fluten free for 5 days and today on the 5th day I feel good! I pass sonic and decide ice cream sounds great! I get a choclate shake and 10min later after only drinking half I feel sick. My stomach is gassy I feel the urge to poop instantly my head hurts I feel sweaty and its damn cold almost like the break out in a sweat you get when you feel your gonna puke. I get on the web and google this shake thinking no way does it have gluten. Well im right it doesn't but its made in the same containors that they make malt which has gluten. Sooo cross contamination took place and now im miserable.

And the guilt sets in. I have not been careful enough with cross contamination for my daughter so this is my well deserved slap in the face :/

[Roda]

Thanks so much for all of the advice! We have taken the food aspect of this very seriously, if it doesn't say certified gluten-free we don't buy it. I however didn't realize the cross contamination was just as important. We do have a gluten-free shelf in our pantry even a gluten-free shelf in our freezer. Looks like the next step is assigning the gluten-free counter and buying new kitchen supplies.

And the guilt sets in. I have not been careful enough with cross contamination for my daughter so this is my well deserved slap in the face :/

Don't beat up on yourself too bad. It is really a huge learning curve! Don't be too quick to rule out other food intolerences. If you don't notice any improvements after you make the changes, revisit it. You are a good parent to have even given gluten a thought in the first place!!

I've been doing this for three years now and I still make mistakes. I think my boys had a reaction to Allegra orally disintegrating tablets(ODT). I had called the company to ask if Allegra was gluten free and they told me all of the tablets were. I took this as the liquid to not be safe. I didn't even think about the ODT and gave them to them for about 4-5 days(the inactive ingredients were different than the tablets). They complained of stomache aches. I knew they hadn't been glutened because I was fine and that's when it dawned on me. I don't know for a fact if the ODT has gluten, I have to call the company back, but that was the only thing different.

[Hailiesmom08]

Thank you!

Hope you are able to find out of it was in fact the meds that hurt them or not.