3 yo daughter possible celiac, my Mom hear just needs some clarity! Help!? Scope Wednesday

[lindseyg930]

This is a long post, but I am thankful for this site and thankful for a community of people who may have traveled a similar diagnosis journey, I will try to keep this as short as possible but there are many details  .... 

My 3 and half year old daughter has been our little mystery girl from the start always keeping us on our toes, from birth (exclusively breastfed, I ate gluten regularly) was the most colicky baby who cried and screamed, I cut dairy with a little bit of success but minimal help. 

She remained cranky, emotional and irritable and then at about 20 months when she was old enough to talk she complained of headaches, she would say my head hurts and point to her forehead.... at her 2 year well visit she was referred to neurology for a brain MRI were the found a benign cyst that cause no symptoms, headache persist to the point where they are daily and constant, then came frequent urination, 15-20 wet diapers a day, was thought to possibly be diabetic (negative), then they found her urine was incredibly diluted so tested for diabetes inspipdus (negative) still has frequent urination. 

Fast forward a few months at her 3 year old well visit. After many, many, MANY upper respiratory infections, 3 rounds of strep throat and always just feeling exhaled, cranky, irritable, sleeping terrible and horrible consistent headaches her Dr ordered her Iron levels. Finally maybe an answer! Our girl was iron deficient, it was incredibly low but was concerning was her iron saturation at a 16% so she went on 4 months of iron supplements and at her re draw found that her iron saturation had actually gotten worse. 

With a history of autoimmune disease and IBD for me (Mom) and the persistent headaches increasing irritability and other symptoms like a red bumpy rash on her cheeks that wouldn't respond to creams, not gaining weight, tummy aches, vommiting randomly, unexplained fevers, frequent illness and iron deficiency not responding to treatment her Dr decided to draw a celiac panel. Finally ....maybe an answer! 

Her Labs showed a low IGA serum (10) which then led to her only positive Celiac test the ...deamidated gliadin IGG all others were negative but we were told that's because her IGA is so low.

The GI Dr we saw recommended based on her clinical presentation to 100% do an endoscopy which is scheduled on Wednesday 4/14/21 I just feel a bit lost and confused and after all this poor girl has been through with tons of testing and pokes and having gone under general anasthea already etc. that we will have this scope and it will be negative and be back at square one but I do feel like all of these pieces are starting to line up.... as a Mom I just know something is wrong with my baby and I just need clarity! I am sorry for the length of this post but I am hopeful someone out there can relate? 

 

[trents]

Usually, docs are reluctant to do endoscopies on children and it is not done very often. I suppose the reason is it is a higher risk procedure on children than it is on adults but I also think that an endoscopy/biopsy is less likely to show villi damage to the small bowel lining with children who are celiacs than it is for adults. She may also not have celiac disease but be gluten sensitive. The symptoms are largely similar for both but the difference is celiac disease damages the small bowel villi.

What about cows milk protein sensitivity? Have you looked into that?

I believe you should consider a gluten free diet trial to see if she improves. I would also consider getting genetic testing done to see if she is genetically at high risk for celiac disease. If the docs aren't willing to order a genetic test then you can order a home genetic test kit on your own dime.

[knitty kitty]

@lindseyg930, Welcome to the forum!

Yes, even though your daughter is very young, I think an endoscopy is warranted in this case.  Definitely to check for Celiac Disease, but also for other problems.  One poster's daughter had a twist in her intestines that would not have been found without an endoscopy which once untwisted she improved dramatically despite being diagnosed with Celiac as well.

The DPG test you mentioned is the test that picks up Celiac in very young children like your daughter.  Other antibodies aren't made until a person is older, so it's not surprising that's the only positive.  

Be aware that Celiac is a genetic autoimmune disease.  Your IBS may actually be Celiac.  All first degree relatives should be screened.  Genetic testing would be beneficial.

Has your daughter been checked for other vitamin and mineral deficiencies?  After being so ill for so long...it's rare to have a deficiency in just one vitamin or mineral.

Iron deficiency treatment requires more than just iron.... Riboflavin (deficiency symptom is headaches), and Vitamin C (deficiency symptom is excessive urination), and thiamine, along with folate and Cobalamine.

I'm concerned about the symptoms you listed....

"not gaining weight, tummy aches, vommiting randomly, unexplained fevers, frequent illness" and "red bumpy rash on her cheeks that wouldn't respond to creams"

These are symptoms of niacin and thiamine deficiencies.  The eight B vitamins are water soluble and easily lost with vomiting and frequent urination. 

Anesthesia can cause Cobalamine B12 deficiency.  Ask your doctor about a preventative B12 shot.

Do ask your doctor about checking for deficiencies!  

Do keep us posted on the results!  We're here worrying right along with you.  

 

 

 

[lindseyg930]

5 hours ago, knitty kitty said:

@lindseyg930, Welcome to the forum!

Yes, even though your daughter is very young, I think an endoscopy is warranted in this case.  Definitely to check for Celiac Disease, but also for other problems.  One poster's daughter had a twist in her intestines that would not have been found without an endoscopy which once untwisted she improved dramatically despite being diagnosed with Celiac as well.

The DPG test you mentioned is the test that picks up Celiac in very young children like your daughter.  Other antibodies aren't made until a person is older, so it's not surprising that's the only positive.  

Be aware that Celiac is a genetic autoimmune disease.  Your IBS may actually be Celiac.  All first degree relatives should be screened.  Genetic testing would be beneficial.

Has your daughter been checked for other vitamin and mineral deficiencies?  After being so ill for so long...it's rare to have a deficiency in just one vitamin or mineral.

Iron deficiency treatment requires more than just iron.... Riboflavin (deficiency symptom is headaches), and Vitamin C (deficiency symptom is excessive urination), and thiamine, along with folate and Cobalamine.

I'm concerned about the symptoms you listed....

"not gaining weight, tummy aches, vommiting randomly, unexplained fevers, frequent illness" and "red bumpy rash on her cheeks that wouldn't respond to creams"

These are symptoms of niacin and thiamine deficiencies.  The eight B vitamins are water soluble and easily lost with vomiting and frequent urination. 

Anesthesia can cause Cobalamine B12 deficiency.  Ask your doctor about a preventative B12 shot.

Do ask your doctor about checking for deficiencies!  

Do keep us posted on the results!  We're here worrying right along with you.  

 

 

 

Thank you so much for responding and shining some light on our sweet girl! In my heart I do trust the GI Dr. and her primary that a scope is needed I am just anxious as the procedure is more invasive than just an MRI or ultrasound like she's done, but I do feel that its the next step in this puzzle fo her.

I have had years of IBS and no answers, I was tested for celiac 16 years ago but it was "negative" but I was not consuming gluten at that time so it was highly recommended to get screened again if she tests positive. It does run in my Mothers family (she is not but her aunts, and sister are)

We have been to so many specialists that can't seem to pin point the exact reason but the GI Dr. really seemed to understand what she's been going through and though I hate to praise God for a disease we would finally have peace and an answer for her. If the scope is negative we have thought of seeking out an alternative medicine type Dr. and/or an elimination diet. We will absolutely be asking her pediatrician for more deficiency testing! 

Thank you all! Her scope is tomorrow morning 🙂

[lindseyg930]

9 hours ago, trents said:

Usually, docs are reluctant to do endoscopies on children and it is not done very often. I suppose the reason is it is a higher risk procedure on children than it is on adults but I also think that an endoscopy/biopsy is less likely to show villi damage to the small bowel lining with children who are celiacs than it is for adults. She may also not have celiac disease but be gluten sensitive. The symptoms are largely similar for both but the difference is celiac disease damages the small bowel villi.

What about cows milk protein sensitivity? Have you looked into that?

I believe you should consider a gluten free diet trial to see if she improves. I would also consider getting genetic testing done to see if she is genetically at high risk for celiac disease. If the docs aren't willing to order a genetic test then you can order a home genetic test kit on your own dime.

Thank you for your reply! We did eliminate cows milk protein when she was an infant but re introduced later but it could be worth looking into again for sure. If the scope is negative for celiac we definitely believe an elimination diet and/ or genetic screening would be the best next step! Along with some other possible deficiencies poster below listed. 

[Scott Adams]

One thing to keep in mind, just in case her biopsy results are negative, is that about 1% of people have celiac disease, but around 12% have non-celiac gluten sensitivity, and they are still doing research to find a way to screen for NCGS. Given her positive DPG test she almost certainly has gluten sensitivity to some degree, so it would be a good idea for you to try a gluten-free diet no matter what the results of the endoscopy show.

[knitty kitty]

6 hours ago, lindseyg930 said:

Thank you so much for responding and shining some light on our sweet girl! In my heart I do trust the GI Dr. and her primary that a scope is needed I am just anxious as the procedure is more invasive than just an MRI or ultrasound like she's done, but I do feel that its the next step in this puzzle fo her.

I have had years of IBS and no answers, I was tested for celiac 16 years ago but it was "negative" but I was not consuming gluten at that time so it was highly recommended to get screened again if she tests positive. It does run in my Mothers family (she is not but her aunts, and sister are)

We have been to so many specialists that can't seem to pin point the exact reason but the GI Dr. really seemed to understand what she's been going through and though I hate to praise God for a disease we would finally have peace and an answer for her. If the scope is negative we have thought of seeking out an alternative medicine type Dr. and/or an elimination diet. We will absolutely be asking her pediatrician for more deficiency testing! 

Thank you all! Her scope is tomorrow morning 🙂

I praise G* d for Celiac because it's a disease that doesn't require pharmaceuticals or surgery to correct.  We simply need a good diet.

Here's my (other) favorite site...  information from Dr. Marrs and Dr. Lonsdale made a huge impact on my life.

https://www.hormonesmatter.com/contemplating-cyclic-vomiting-syndrome/

Keep us posted!

[Melissa93]

18 hours ago, lindseyg930 said:

This is a long post, but I am thankful for this site and thankful for a community of people who may have traveled a similar diagnosis journey, I will try to keep this as short as possible but there are many details  .... 

My 3 and half year old daughter has been our little mystery girl from the start always keeping us on our toes, from birth (exclusively breastfed, I ate gluten regularly) was the most colicky baby who cried and screamed, I cut dairy with a little bit of success but minimal help. 

She remained cranky, emotional and irritable and then at about 20 months when she was old enough to talk she complained of headaches, she would say my head hurts and point to her forehead.... at her 2 year well visit she was referred to neurology for a brain MRI were the found a benign cyst that cause no symptoms, headache persist to the point where they are daily and constant, then came frequent urination, 15-20 wet diapers a day, was thought to possibly be diabetic (negative), then they found her urine was incredibly diluted so tested for diabetes inspipdus (negative) still has frequent urination. 

Fast forward a few months at her 3 year old well visit. After many, many, MANY upper respiratory infections, 3 rounds of strep throat and always just feeling exhaled, cranky, irritable, sleeping terrible and horrible consistent headaches her Dr ordered her Iron levels. Finally maybe an answer! Our girl was iron deficient, it was incredibly low but was concerning was her iron saturation at a 16% so she went on 4 months of iron supplements and at her re draw found that her iron saturation had actually gotten worse. 

With a history of autoimmune disease and IBD for me (Mom) and the persistent headaches increasing irritability and other symptoms like a red bumpy rash on her cheeks that wouldn't respond to creams, not gaining weight, tummy aches, vommiting randomly, unexplained fevers, frequent illness and iron deficiency not responding to treatment her Dr decided to draw a celiac panel. Finally ....maybe an answer! 

Her Labs showed a low IGA serum (10) which then led to her only positive Celiac test the ...deamidated gliadin IGG all others were negative but we were told that's because her IGA is so low.

The GI Dr we saw recommended based on her clinical presentation to 100% do an endoscopy which is scheduled on Wednesday 4/14/21 I just feel a bit lost and confused and after all this poor girl has been through with tons of testing and pokes and having gone under general anasthea already etc. that we will have this scope and it will be negative and be back at square one but I do feel like all of these pieces are starting to line up.... as a Mom I just know something is wrong with my baby and I just need clarity! I am sorry for the length of this post but I am hopeful someone out there can relate? 

 

Hey!

When I read about the respiratory infections I automatically thought IGA deficiency. I have partial selective-IGA deficiency, my levels are (too) low but not as low as your daughter. My celiac panels came back positive, even my IGA ones, but only JUST above the standard. They told me that this was because my IGA was low as well. I didn't get a scope for my official diagnosis because of covid, but I have had a scope when I was 5 y/o. This was the first time I was ever checked for celiac (over 20 years ago), after testing positive in the blood. Mine came back inconclusive, second time at 19 again, and eventually finally got my diagnosis at 27 while being in my pain my whole life. Your daughter will be okay, I don't remember much of my scope just that I had to go to the hospital and that I was a bit scared. Make sure the doctor knows that he/she needs to make multiple biopties in multiple different areas, this was something that they didn't do in my case.

Good luck! And it it comes back negative, I would suggest trying to go 100% gluten free and see how she feels after 3-4 weeks.

[MomofHooligans]

21 hours ago, lindseyg930 said:

This is a long post, but I am thankful for this site and thankful for a community of people who may have traveled a similar diagnosis journey, I will try to keep this as short as possible but there are many details  .... 

My 3 and half year old daughter has been our little mystery girl from the start always keeping us on our toes, from birth (exclusively breastfed, I ate gluten regularly) was the most colicky baby who cried and screamed, I cut dairy with a little bit of success but minimal help. 

She remained cranky, emotional and irritable and then at about 20 months when she was old enough to talk she complained of headaches, she would say my head hurts and point to her forehead.... at her 2 year well visit she was referred to neurology for a brain MRI were the found a benign cyst that cause no symptoms, headache persist to the point where they are daily and constant, then came frequent urination, 15-20 wet diapers a day, was thought to possibly be diabetic (negative), then they found her urine was incredibly diluted so tested for diabetes inspipdus (negative) still has frequent urination. 

Fast forward a few months at her 3 year old well visit. After many, many, MANY upper respiratory infections, 3 rounds of strep throat and always just feeling exhaled, cranky, irritable, sleeping terrible and horrible consistent headaches her Dr ordered her Iron levels. Finally maybe an answer! Our girl was iron deficient, it was incredibly low but was concerning was her iron saturation at a 16% so she went on 4 months of iron supplements and at her re draw found that her iron saturation had actually gotten worse. 

With a history of autoimmune disease and IBD for me (Mom) and the persistent headaches increasing irritability and other symptoms like a red bumpy rash on her cheeks that wouldn't respond to creams, not gaining weight, tummy aches, vommiting randomly, unexplained fevers, frequent illness and iron deficiency not responding to treatment her Dr decided to draw a celiac panel. Finally ....maybe an answer! 

Her Labs showed a low IGA serum (10) which then led to her only positive Celiac test the ...deamidated gliadin IGG all others were negative but we were told that's because her IGA is so low.

The GI Dr we saw recommended based on her clinical presentation to 100% do an endoscopy which is scheduled on Wednesday 4/14/21 I just feel a bit lost and confused and after all this poor girl has been through with tons of testing and pokes and having gone under general anasthea already etc. that we will have this scope and it will be negative and be back at square one but I do feel like all of these pieces are starting to line up.... as a Mom I just know something is wrong with my baby and I just need clarity! I am sorry for the length of this post but I am hopeful someone out there can relate? 

 

I can definitely relate and I would say, follow your doctor's recommendation. I agree with the person who said that doctors are reluctant to do endoscopy unless it is warranted. My experience has been that it's more likely that you have to convince your doctor to perform one. (I have had two kids get them, one took more convincing than the other and, 8 months later, I am STILL working on my doctor to give me a simple blood test.)

My 4yo was diagnosed at the end of last year. No known family history. Like your daughter, he was a pretty grumpy and emotional kid from about the age of 1. However, he didn't present with any GI symptoms until around his 4th birthday. He also wasn't showing signs of malabsorption until his 4yo checkup. Up to that point, he was consistently almost off the charts for height and weight. Then, about 2 weeks before his checkup, he began having what I call wet burps (vomiting a small amount into his mouth) ALL the time, every 15 minutes or so, all day, everyday, coupled with constipation. At his checkup, he had dropped to the 70th percentile for height and 50th for weight. That doesn't sound bad, until you consider that he was in the 97th and 93rd at his 3yo checkup. For him, he was dropping off the chart. His doctor tried a few dietary tweaks and prescribed an antacid and called to check in two weeks later. When there was no change, she tried a stronger antacid, to no avail. Thankfully, being the amazing pediatrician that she is, she quickly realized she was out of her depth after about a month of him only getting worse. She referred him to a pediatric GI specialist. The specialist also tried dietary changes and prescribed a laxative and an even stronger antacid. After another month on that regimen, with no improvement, she scheduled an endoscopy. At that point, no one was thinking Celiac, not even the specialist. However, when she got in there, she could immediately visually assess that he likely had it. (So, the idea that intestinal damage may not be present in small children is a misconception.) She took a biopsy and sent off his blood work. Sure enough, he has it.

More of a long story short, he had a second endoscopy to confirm the diagnosis and is due for a third one in a couple months to see how he is healing. It is a scary process for a mom, especially when they are so little. I would tell you that knowing is better than guessing and having a confirmed diagnosis paves the way to make sure that your child's doctor is monitoring them correctly in the years to come. Since there are all sorts of other health issues that can spring from celiac disease, it's good to have a definitive answer and know, for sure, what to look for. My son was barely four when he went under. He did really well. It was a super-short procedure (less than 40 minutes) and there is no recovery necessary, beyond being drowsy for awhile and where they place the IV. Both times, he woke up asking for snacks. LOL

Hang in there, Mama!

[lindseyg930]

2 hours ago, MomofHooligans said:

I can definitely relate and I would say, follow your doctor's recommendation. I agree with the person who said that doctors are reluctant to do endoscopy unless it is warranted. My experience has been that it's more likely that you have to convince your doctor to perform one. (I have had two kids get them, one took more convincing than the other and, 8 months later, I am STILL working on my doctor to give me a simple blood test.)

My 4yo was diagnosed at the end of last year. No known family history. Like your daughter, he was a pretty grumpy and emotional kid from about the age of 1. However, he didn't present with any GI symptoms until around his 4th birthday. He also wasn't showing signs of malabsorption until his 4yo checkup. Up to that point, he was consistently almost off the charts for height and weight. Then, about 2 weeks before his checkup, he began having what I call wet burps (vomiting a small amount into his mouth) ALL the time, every 15 minutes or so, all day, everyday, coupled with constipation. At his checkup, he had dropped to the 70th percentile for height and 50th for weight. That doesn't sound bad, until you consider that he was in the 97th and 93rd at his 3yo checkup. For him, he was dropping off the chart. His doctor tried a few dietary tweaks and prescribed an antacid and called to check in two weeks later. When there was no change, she tried a stronger antacid, to no avail. Thankfully, being the amazing pediatrician that she is, she quickly realized she was out of her depth after about a month of him only getting worse. She referred him to a pediatric GI specialist. The specialist also tried dietary changes and prescribed a laxative and an even stronger antacid. After another month on that regimen, with no improvement, she scheduled an endoscopy. At that point, no one was thinking Celiac, not even the specialist. However, when she got in there, she could immediately visually assess that he likely had it. (So, the idea that intestinal damage may not be present in small children is a misconception.) She took a biopsy and sent off his blood work. Sure enough, he has it.

More of a long story short, he had a second endoscopy to confirm the diagnosis and is due for a third one in a couple months to see how he is healing. It is a scary process for a mom, especially when they are so little. I would tell you that knowing is better than guessing and having a confirmed diagnosis paves the way to make sure that your child's doctor is monitoring them correctly in the years to come. Since there are all sorts of other health issues that can spring from celiac disease, it's good to have a definitive answer and know, for sure, what to look for. My son was barely four when he went under. He did really well. It was a super-short procedure (less than 40 minutes) and there is no recovery necessary, beyond being drowsy for awhile and where they place the IV. Both times, he woke up asking for snacks. LOL

Hang in there, Mama!

Thank you 🙏🏻 so so much for your words and your personal perspective! It is invaluable as I try and calm my nerves for her scope! As a Momma you just know in your gut when something isn’t right and I will go to all lengths to help my sweet daughter find her answer ! Truly, thank you so much!! 
 

I will post any results we get tomorrow !