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Toddler With Suspected Celiac


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51 replies to this topic

#46 Sesara

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Posted 01 June 2012 - 11:30 AM

Lol, tmi, but we have been gluten free for 2.5 days, and reasonably careful about fructose and lactose, and last night, he actually fell asleep without being carried or nursed, and today he had his first normal looking BM in almost 6 months! I am feeling very encouraged.
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#47 Sesara

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Posted 02 June 2012 - 07:20 PM

I think he is in gluten withdrawal. Starting the day after we went gluten-free, and getting worse every day since, he has just been having epic temper tantrums and falling apart over every little thing. Hitting. I suppose I could blame it on his approaching terrible 2's (he'll be 22 months on the 8th) or the trauma of the endoscopy, but his behavior has just been off.

Looking through the forum, I see it mentioned that kids who are on the autism spectrum or with SPD's sometimes have more noticeable and pronounced withdrawal symptoms so I am thinking (or maybe hoping) that is what is going on here. His tummy seems to be bothering him a bit since going gluten-free as well, though he can't vocalize it. I think he had a growth spurt last night too. His stomach does appear less bloated already, but we still had all loose stools today.

I am considering temporarily removing all dairy from his diet to see if it helps things along. I want to speed healing as much as possible if this is how he's going to be. Does anyone have a recommendations on how long to take out dairy before trying to re-introduce?
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#48 Sesara

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Posted 05 June 2012 - 03:21 PM

Argh. Back in frustration land. Got his upper GI results today...so, his esophagus showed some chronic inflammation, indicating acid reflux, though he's never clearly demonstrated such symptoms. Stomach looked fine. Small intestine...well, basically, they couldn't see clear villous atrophy. However, he did have intraepithelial lymphocytosis, with lymphocytes >20 per 100 enterocytes. Leading the list of potential diagnoses were latent celiac disease or partially treated celiac disease.

Of course, since there are other things that could also cause it, the GI is not comfortable making a Celiac diagnosis. So NOW he wants to do the full Prometheus celiac panel - he was not happy with me when I told him that we had already gone gluten-free for a week and wanted me to put DS back on gluten for a month before doing the tests, which I refused to do. I did tell him that I was happy to do genetic testing - he decided to order the Celiac plus panel anyways, though I doubt that his EMA or DGP will come back positive now.

Then I got yelled at because I only give him water and coconut milk to drink - apparently I should just give him pediasure because maybe he isn't getting enough calories and I'm just not feeding him right (meaning enough calories - nevermind that DS is putting away mixed nuts like crazy as the doctor accuses me of this). So he wants me to meet with a dietician, which is fine...I'll start keeping a food diary tomorrow, and I bet they will be shocked at his caloric intake, since he eats all the freaking time.

And we're supposed to meet again in a month. Not sure what will have changed then except that we'll have the Prometheus labs back. I'm so disgusted by all this. He seems unwilling to diagnose simply because "don't I know that it will be a total lifestyle change". Yeah, and I'd like to get started getting my son healthy, rather than just treading water with the failure to thrive label you slapped on him. <_<
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#49 deb445

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Posted 05 June 2012 - 05:56 PM

Then I got yelled at because I only give him water and coconut milk to drink - apparently I should just give him pediasure because maybe he isn't getting enough calories


I think coconut milk is brilliant, especially when compared to the chemicals that are added to pediasure.
And, when meeting with the nutritionist, be armed with information. There is still a lot of misinformation about grains and dairy being essential, even among many nutritionists. People sometimes panic when they're outside their comfort zone. Been down this road.
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#50 Sesara

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Posted 05 June 2012 - 06:00 PM

Also looking at his measurements that they took today...he is now in the 2nd percentile, where he was in the 8th at his 18 month appointment, and has further fallen from the 50th to the 30th for height.

And then the GI wonders why I don't want to do another month of gluten. I just want to cry and bang my head against a wall.
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#51 Roda

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Posted 05 June 2012 - 06:48 PM

I'm sorry you and your son are having a rough time. It's good that the doctor wants to rule other things out, but at the same time you don't want him/her to discount that it could very well be latent/early celiac. You don't want to wait for more damage to be done. It's too bad they didn't get the rest of the bloods when he was in for his scope. It would have been easy to do while they had him sedated. At least you seem well informed and have him gluten free now. I hate it when doctors tip toe around a celiac diagnosis. Is is great to have celiac? No, but there are a lot worse things that someone could be diagnosed with. It's manageable with diet instead of pills. I'm glad he has you as his advocate. When it comes to our kids we will do anything to make them not hurt, be well and happy.

My youngest son had so many issues as a baby(horrible reflux, constant infections, food intolerences, etc). I eliminated so much from my diet in hopes to give him relief. Upon reintroducing foods back for myself(after I stopped breastfeeding) I started having issues. It eventually took 2.5 years for me to find out I had celiac. By the time I was diagnosed my son was going on 4 years old. He had been seeing an allergist/immunologist since he wad 14 months. I had him blood tested(didn't get the full pannel either only IgA and IgA tTG) and he was negative. Aside from being small he otherwise seemed to have all his issues he had as a baby/toddler resolve so we kept him eating normal. He began complaining of reflux, fat in stool and weird behavior changes at age 5. This went on for six months. I had him retested when he was almost 6 almost two years from his first celiac test. He did get the full panel and the only test to be positive(barely, but a postitive is a positive) was his IgA tTG. I put him gluten free immediately not wanting to put him through a scope that could be inconclusive. In hindsite I regretted not doing the scope on him, so after about 4.5 months I reintroduced gluten in the hopes of doing a three month challenge. Three days is allmy son and his dad and I could tolerate. All his symptoms came back with a vengence. So suffice to say he is gluten free for life. I consider him a diagnosed celiac because of my diagnosis of celiac, his positive blood work, resolution of symptoms on a gluten free diet and return of symptoms upon gluten reintroduction.

My oldest son had many issues also. After his brother went gluten free it got me looking very serious at him. He has been blood tested several times and his blood work is always VERY negative. I did have him scoped last summer just in case he was a sero negative celiac. His scope was normal also. We decided to trial him gluten free anyway, due to his problems with constipation, daily stomach pain/gas/bloating, and stalled growth. What an amazing difference it made! All his problems resolved and he gained 6 pounds in a month and has finally started growing. He has never gained that much in a year since his first year of life. We did challenge just to see what would happen and he did get some minor symptoms. He decided that he wanted to stay gluten free because he feels better. He is now 11.

I can sympathize with you on wanting your child to be well. You are on a journey together and a healthier one. I hope you consider at least getting the full celiac blood work. If it is positive then I would consider myself celiac as well. There are doctors that will diagnose on blood work alone.
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Me:
Celiac disease(positive blood work/biopsy- 10/2008), gluten free oat intolerent, Hashimoto's Thyroiditis/Disease, Raynaud's Disease


DS2(age 9):
celiac disease(positive IgA tTG, no biopsy- 11/2010)


DS1(age 13):
repeated negative bloodwork and negative EGD/biopsy. Started on a gluten free trial(8/2011). He has decided to stay gluten free due to all of the improvements he has experienced on the diet.


#52 Sesara

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Posted 08 June 2012 - 10:43 AM

I'm sorry you and your son are having a rough time. It's good that the doctor wants to rule other things out, but at the same time you don't want him/her to discount that it could very well be latent/early celiac. You don't want to wait for more damage to be done. It's too bad they didn't get the rest of the bloods when he was in for his scope. It would have been easy to do while they had him sedated. At least you seem well informed and have him gluten free now. I hate it when doctors tip toe around a celiac diagnosis. Is is great to have celiac? No, but there are a lot worse things that someone could be diagnosed with. It's manageable with diet instead of pills. I'm glad he has you as his advocate. When it comes to our kids we will do anything to make them not hurt, be well and happy.

My youngest son had so many issues as a baby(horrible reflux, constant infections, food intolerences, etc). I eliminated so much from my diet in hopes to give him relief. Upon reintroducing foods back for myself(after I stopped breastfeeding) I started having issues. It eventually took 2.5 years for me to find out I had celiac. By the time I was diagnosed my son was going on 4 years old. He had been seeing an allergist/immunologist since he wad 14 months. I had him blood tested(didn't get the full pannel either only IgA and IgA tTG) and he was negative. Aside from being small he otherwise seemed to have all his issues he had as a baby/toddler resolve so we kept him eating normal. He began complaining of reflux, fat in stool and weird behavior changes at age 5. This went on for six months. I had him retested when he was almost 6 almost two years from his first celiac test. He did get the full panel and the only test to be positive(barely, but a postitive is a positive) was his IgA tTG. I put him gluten free immediately not wanting to put him through a scope that could be inconclusive. In hindsite I regretted not doing the scope on him, so after about 4.5 months I reintroduced gluten in the hopes of doing a three month challenge. Three days is allmy son and his dad and I could tolerate. All his symptoms came back with a vengence. So suffice to say he is gluten free for life. I consider him a diagnosed celiac because of my diagnosis of celiac, his positive blood work, resolution of symptoms on a gluten free diet and return of symptoms upon gluten reintroduction.

My oldest son had many issues also. After his brother went gluten free it got me looking very serious at him. He has been blood tested several times and his blood work is always VERY negative. I did have him scoped last summer just in case he was a sero negative celiac. His scope was normal also. We decided to trial him gluten free anyway, due to his problems with constipation, daily stomach pain/gas/bloating, and stalled growth. What an amazing difference it made! All his problems resolved and he gained 6 pounds in a month and has finally started growing. He has never gained that much in a year since his first year of life. We did challenge just to see what would happen and he did get some minor symptoms. He decided that he wanted to stay gluten free because he feels better. He is now 11.

I can sympathize with you on wanting your child to be well. You are on a journey together and a healthier one. I hope you consider at least getting the full celiac blood work. If it is positive then I would consider myself celiac as well. There are doctors that will diagnose on blood work alone.


Ok, I'm almost positive, having actually read a description of it, that I have dermatitis herpeteformis. I don't know why I didn't remember this sooner, but back in college, I broke out in a horrible rash that was itchy and oozy and they told me I had scabies, but the treatment didn't work and they re-treated with something stronger, and took skin for allergy testing. At the dermatologists, someone said something to me about maybe having a wheat allergy, but (unsurprisingly) the allergy test came back normal and then I finally cleared up. Except that ever since then, I have periodically gotten breakouts on the top of my feet of tiny, oozy pustules, and since a latex sensitivity I developed from food service gloves in culinary school, the backs of my hands also occasionally have broken out, one winter so badly that I ended up looking like a burn victim for weeks despite regular applications of hydrocortisone and aquaphor.

So yeah, I'm pretty much now just planning on getting a full blood panel for myself as soon as I get the results back for my son, which I fully expect will show genes associated with celiac. Because I might as well accept that there's a good chance I have it too if I have DH.
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