Search Results for 'celiac'

[Anonymous]

Thank you all for your support. I guess I’m in some kind of denial stage right now… I understand that she has epilepsy, but I can’t accept that medicating is automatically the right decision. I understand that it probably is the right decision, but certainly not the only one when we’re talking about 2 seizures a year at this point, sometimes even less in the past. I’ve decided that I need another opinion, just so that I’m prepared. I know that our regular neuro wants to do meds, our ped thinks that we now have to do meds, and I got a second neuro opinion in September, but wasn’t sure where he stood.

Christine/Sheri- I’ll definitely ask for the celiac testing to be done. I also want other bloodwork to be done to r/o any potential organic causes that could be provoking the seizures. Since I’m asking for bloodwork already, it doesn’t hurt to ask for a celiac test. Especially with Hailey’s history, and our family history of bowel problems. But, from what I’ve read, it’s complex partial seizures that are thought to be associated with celiac, and not generalized seizures like Sarah has.

[Anonymous]

lori, sheri has a really good point about diet—especially when she mentioned gluten.

celiac disease can cause seizures in some children, i don’t think it is a common symptom, but they used to think you had to have a particular set of symptoms to have celiac. one of my kids had no symptoms at all.

if you want to check into it, make sure that they run the right tests. ask for a total Iga serum and a tissue transglutaminase IgA—(Ttg IgA for short) a Ttg test is the most accurate test, but you need to know if IgA levels are normal to get an accurate reading.

i’m sorry you have one more lousy thing to deal with!

[Anonymous]

they really can’t tell you how severe his reflux is unless he has a scope with biopsies. i was told that i have severe reflux esophagitits—-but i didn’t think my symptoms were bad enough to call it severe, so i asked my kids’ gi how they decide if it is severe. he said it has to do with cellular changes.

if your son’s problems are being caused by a food intolerance a fundo isn’t going to do him alot of good—-i would think it could possibley even cause him more problems, especially if he has motility issues.

i think i’d back up to the 1/2 neocate 1/2 alimentum for a while since he was doing so well on that and gaining weight well that way.

a scope is definitely not worthless—there is no other way that they can tell the condition of his esophagus. if it is not red and irritated, than the reflux is not doing any damage. if they take biopsies, like they should, they would be able to find eosinophil cells which would tell whether or not he has some food allergies. if they really do the scope right, they would also take biopsies of the duodenum and check for celiac since you say he does not seem to be digesting his food well.

don’t let them do any surgery on him until they have done testing!

[Anonymous]

if they are showing positive levels of Ttg, then they have damage—even if your doc is not picking it up with a scope.

an easy way to get a more definite answer would be to put your boys totally gluten free and totally casein and lacatose free—be diligent about all hidden gluten and any possible contamination—-and then have their blood tests run again. if their Ttg levels have dropped, then you have your answer.

i’m not sure what you mean by both the IgA and the Ttg showing it because you have to do a specific IgA test to look for something. in this case, it would be Ttg IgA. i have one child that is IgA deficient, so we have to run IgG tests on him rather than IgA tests.

you don’t have to have diarreah or be skinny to be a celiac. there are plenty of celiacs that are constipated and overweight. the list of possible symptoms that can be caused by celiac is unreal. all 3 of my girls had different symptoms—–one of them had no symptoms.

do you get copies of your children’s blood tests? i would be interested to know what their numbers were and what the lab cut-off results were.

after a number of meltdowns early on, (on my part) we have managed to cook most of the foods we used to cook. we just use different ingredients and some different brands. it is much more inconvenient than it is hard.

[Anonymous]

what blood tests did they do? if they did the proper testing, you aren’t going to get a false positive. 3 of my girls have celiac disease. two of them have had endoscopies which did not show damage. the doc did not even bother to scope the 3rd daughter after all 3 girls had positive blood work. kassie gets sick when she eats gluten, molly does not—-but molly’s original blood work was higher than kassie’s—-which would indicate more intestinal damage.

i asked our ped gi about my girls not having any damage, and he said that they probably did with their numbers. celiac damage can be spotty, so if the doc doesn’t happen to biopsy the spots with damage, it looks like their small intestine is clean. also, the small intestine is about 22 ft. long and the scope can only get in about 6 ft, which leaves an awful lot of ft. that cannot be biopsied to look for damage.

sometimes, a celiac will also be lactose intolerant because of the intestinal damage. once the intestinal damage heals the lactose intolerance will go away.

i notice you list 6 different angel babies—-i assume these are miscarriages? if your children have celiac disease, and it sounds like it is a good possibility, chances are that you also have it if you have had that many miscarriages.

we entered a celiac study after our girls were diagnosed and were able to get genetic testing done on all of our family. my husband and i both carry the celiac gene and 8 of my 9 children also carry it—but for some reason, it has only activated in the 3 girls at this point.

do you know what celiac blood tests your doctor ran on your children?

my twins both had reflux problems as teenagers, but after about a year of being gluten free they were able to go off of the PPIs.

the blood tests for celiac are not particularly accurate under the age of 3, so if your child’s test was looking positive at that young of an age it would make me think all the more that it could be a real possibility.

the tests that need to be done are a total IgA serum and a Ttg IgA. Ttg is tissue transglutaminate and there is almost nothing else that can cause a positive Ttg except celiac—–well, graft vrs. host disease can cause it, but you didn’t mention that any of your boys have had transplants…….i think there might have been some other really rare thing that could raise it. basically, if you have a positive Ttg, you have celiac. also, if you have dermatitis herpetiformis, you have celiac disease.

[Anonymous]

Ok, so my 1st DS had a blood test at 10 months that “indicated celiac” but the upper endoscopy showed no damage although it showed he didn’t have the enzymes to digest lactose and “some complex carbs”. My next DS at around 15 months had a blood test that was positive for both tests that showed a “75% chance of having celiac”. The endoscopy showed no damage, a stool test showed he is malabsorbing carbs. My 3 DS they figure he can’t digest carbs either no tests were done. All three gets diarreah frequently and terribly if they get dairy. 1 DS and 3 DS pukes on and off. 1 DS diognosed with sever reflux at age 5, 3 DS I just was told to avoid spicy foods too! I was told bc the endoscopy did not show damage and the blood tests were positive they do not have celiac but could possibly develope it at sometime. So, is that right?

[Anonymous]

I read your siggy and it says that food intolerances are suspected and you also said you are TED ing it. All that said. I’d get one done. The biopses can show if if you are dealing with somethign like Celiac’s instead of a plain old allergy.

It can also tell you abtout any damage in the esophagus and through the stomach. You get some really neat pictures as well…LOL

It a VERY simple procedure. It took all of 15 mins. Jedd had NO pain form it afterwards either.

This was actually the first OR trip Jedd had after his open heart procedure. He was around 7.5 months old at the time. So he was only about 1.5 months post op of heart surgery.

He had an IV for his ABX due to his heart issue. We really only had time to sign in to the waiting room and get a cup of coffee and then we got the call that Jedd was in the PACU.

[Anonymous]

iwould discussit with her as little as possible—never if you can help it. how old is your little one? i don’t think you can turn a baby into a hypochondriac.

my mother in law once asked me, “do you think that maybe she is just spoiled,”—-my daughter’s reflux was severe enough that she ended up needing a fundo before she was a year old.

when one of my twins was feeling short of breath all the time, my MIL said, “do think that maybe that is something she has learned?” turns out she had pretty bad reflux, also, when we got her on a PPI, the shortness of breath went away.

after my girls were diagnosed with celiac, she called me and apologized and said that she thought she undrstood me a little more. celiac just isn’t something i can create—and even if i could i sure wouldn’t do it!!!!!!

i think i have just talked too much about medical things around her, so i need to be careful about my conversations when i am around her. part of the problem is that we have had a lot of medical problems, and part of it is that i am a bit of a medical buff—i like to look things up when i hear about other peoples problems—-obviously i have bored them to irritation—-oh well, i am what i am, and someone has to look out for my kids.

[Anonymous]

thanks erin and jessica–the info. about the celiac is interesting and i’ll definitely bring it up to my dr.

we just had the worst night ever. I was basically up all night. dh slept in another room b/c he wasn’t feeling well. finn was up screaming in pain so much of the time. i can usually tell the diff. btw reflux and intestinal pain. it seemed like he was having both–stinky gas, straining and turning away from the breast, cringing,crying as he nursed. to top it all off, he’s also having teething pain.

maybe it is the prevacid….i do know thhat his esophagus isn’t healed yet..

erin congrats on the sleep! also–how do i get the home hemoccult tests?

[Anonymous]

Just wanted to add my 2 cents about celiac, etc. My ped GI’s specialty is celiac disease. He does national lectures, etc. Anyway, our ped & ped GI are concerned about celiac w/ Evan… but ped GI said we can’t test until @ least 6mths old & even then it will not be that accurate… more accurate after 1-2yrs old. We even had an EDG (upper endoscopy) & colonoscopy so he had the chance to check for it if he thought it would be beneficial.

My thoughts are that there’s still something bothering Finn (obviously). If you say his diapers are normal color, consistency & smell then the other culprits are either reflux or meds.

I can usually tell the difference b/w reflux pain & tummy pain… can you tell if it’s either of those?

I’ll be honest: Prevacid in general (regardless of kind b/c we’ve used it all: capsules, solutabs, caracream) bothers Evan’s tummy. He was on it the past week. Although his reflux was completely under control while on it (b/c it flared up from vaccines) he was up every 1-2hrs from tummy issues. His diapers were normal (as of 2 days ago) but he was still squirmy & thrashing in crib. Anyway I stopped the Prevacid yesterday & last night he slept 7-12 & 12-4:30. I looked back @ my logs from the past & he did the same thing when we stopped the Prevacid back in July. Just a thought… the key though would be to make sure his esophogus is healed before stopping it to see… & continue an H2 blocker.

Okay, I’ll stop my rambling. I really didn’t want to believe that the Prevacid bothered him so much but it’s really the only common denominator.

Also, fwiw- oats are gluten.

[Anonymous]

WHOA nelly, Hold off on the Oats…and get a scope done…..I say this because if the marker showed a reaction to gluten then the issue could be Cealic’s Disease…..an EDG will show if this is true or not. They will take the 4 biopses and can jsut abou tell by how the esophagus looks.

I woudl ask them whether or not you should add in Wheat, oast prior to the EDG to see if youcan get it to pop positive for you. The thinking would be this….if you eleimate all of the gluten from your diet youcould get a false negative for Celiacs.

[Anonymous]

Yes, yes!! It can show improvements very quickly! I’m so happy to hear this – it means that he definately needs this diet, and you will only see better and better things to come. For Ben, we saw huge language improvements on his 3rd day of being casein free. We then went gluten free 2 days later.

And no, this diet does not only help kids with autism. Although kids on the autistic spectrum and with ADHD tend to show the most dramatic behavioural, developmental and sensory integration improvements, it can help many people with various issues. It’s been shown to greatly help people with autoimmune issues (arthritis, fibromyalgia, lupus, MS) and those with gastrointestinal problems, especially any type of GI inflammatory processes (Crohn’s disease, IBD). When I stick to the diet myself, my allergies, asthma and chronic sinus problems disappear. When I cheat, those all flare up within 24 hours and my mild arthritis symptoms return.

If Jackson is showing the types of improvement you’ve listed, then he likely has some bowel issues like leaky gut and deficiecy in DPP-IV, the enzymes responsible for properly breaking down gluten and casein. With leaky gut, there is usually yeast overgrowth problems. I think he would likely benefit greatly from probiotics and digestive enzymes.

Again, I’m so glad to hear of his improvements!! I know just how tough the diet is to implement, but after a while it just becomes your lifestyle. It’s not much different than someone with Celiac disease who needs to avoid gluten, or someone with diabetes who needs to watch sugar and carbohydrate intake. It will get easier with time, especially if you keep seeing gains from it. If you haven’t done so already, I would suggest looking at the GFCFKids yahoo group, as it is a GREAT resource on this diet. http://health.groups.yahoo.com/group/GFCFKids/

[Anonymous]

kevieb wrote: kristin—-from what i have learned in my studying of autoimmune diseases—which seem to plague our family—psoriasis is considered an autoimmune disease. a few months ago my dad was diagnosed with autoimmune pancreatitits, which is usually resolved with prednisone. but i guess the steroids lower your immune system and he ended up with a staff infection in his spine. he has been pretty sick the last couple of months and i didn’t even know it until a few days ago.

i discovered that autoimmune pancreatitis is often connected to primary schlerosing cholingitis (a liver disease) and inflamatory bowel diseases—both of which one of my sisters has.(plus autoimmune hepatitis). my brother has type 1 diabetes, which is piggyback on the same gene as celiac.

i have been having terrible carpal tunnel problems so the doc checked my B-12 and thyroid. my thyroid is low. the psych took me off the meds because the surgeon had shut my normally functioning thyroid down on purpose years ago because of thyroid lumps. first test was normal, so i didn’t even think about it again until our bone doc checked it. i just read that sometimes low thyroid can either be caused by a pituitary problem or it can be in the thyroid itself—-and sometimes it is an autoimmune problem. i think i have read that they are wondering if fibromyalgia might be an autoimmune problem sometimes.

i don’t think i would mind going back to the days when atopic dermatitis was by biggest problem. i’m so used to the rashes that i hardly think twice about them unless they get to really hurting my fingers with cracks, or if i get some unbearable itching. but, i have been using steroid creams for over 35 years and i am wondering if it has had any effect on my adrenal system—something new i just read about—but i think it is only with extensive use over alot of the body and it sounds like it is usually reversible by itself, but occasionaly needs a little help to resolve.

sorry, i guess i kind of hijacked this thread a little.

feel free to hyjack, esp on this subject! my family is plagued with autoimmune problems as well. my mom has fibrmyalgia, rheumatoid arthritis and was JUST diagnosed with what they thought was rheumatoid vasculitis, but it was actually a severe allergic reaction to the ONLY IV medication that was keeping her RA under control (Orencia) she has been on all other RA drugs and reacted to them in some form or fashion (remicade, MTX, Humira, etc etc) she is now on just steroids. this sucks b/c now she is just going to get worse. 🙁

my grandmother had a weird autoimmune disorder where her eye would droop and they would have to surgically tie it up and on that same side of her face, her throat would close up and she’d have swallowing problems. I forget what it was called. my aunt also had RA (she passed away) but not from RA!

i live in fear all of the time that i will get an autoimmune illness. so far i suffer from migraines and a jaw that clicks out of place (my mom had that problem about 20 years ago) but no other symptoms other than a sudden appearance of keratosis pilaris (rash on the back of my arms) that just popped up like FIVE minutes after I delivered kaden and never went away no matter what i use on it.

sorry to hyjack your hyjack. LOL

[Anonymous]

kristin—-from what i have learned in my studying of autoimmune diseases—which seem to plague our family—psoriasis is considered an autoimmune disease. a few months ago my dad was diagnosed with autoimmune pancreatitits, which is usually resolved with prednisone. but i guess the steroids lower your immune system and he ended up with a staff infection in his spine. he has been pretty sick the last couple of months and i didn’t even know it until a few days ago.

i discovered that autoimmune pancreatitis is often connected to primary schlerosing cholingitis (a liver disease) and inflamatory bowel diseases—both of which one of my sisters has.(plus autoimmune hepatitis). my brother has type 1 diabetes, which is piggyback on the same gene as celiac.

i have been having terrible carpal tunnel problems so the doc checked my B-12 and thyroid. my thyroid is low. the psych took me off the meds because the surgeon had shut my normally functioning thyroid down on purpose years ago because of thyroid lumps. first test was normal, so i didn’t even think about it again until our bone doc checked it. i just read that sometimes low thyroid can either be caused by a pituitary problem or it can be in the thyroid itself—-and sometimes it is an autoimmune problem. i think i have read that they are wondering if fibromyalgia might be an autoimmune problem sometimes.

i don’t think i would mind going back to the days when atopic dermatitis was by biggest problem. i’m so used to the rashes that i hardly think twice about them unless they get to really hurting my fingers with cracks, or if i get some unbearable itching. but, i have been using steroid creams for over 35 years and i am wondering if it has had any effect on my adrenal system—something new i just read about—but i think it is only with extensive use over alot of the body and it sounds like it is usually reversible by itself, but occasionaly needs a little help to resolve.

sorry, i guess i kind of hijacked this thread a little.

[Anonymous]

i guess we must be lucky with our allergist. i took sammie and elliot in yesterday—–a couple of months ago sammie had a cough that seemed to last forever, but she wasn’t sick. we had already tested elliot and knew he has all kinds of allergies. he was in to get started on allergy shots. the allergist did prick tests on sammie’s back, but nothing showed up. he also drew blood—i assume for other testing. he said that even though nothing showed up on the skin tests, he is seeing allergies. he asked me if her eyes were always so red—–i told him that they always looked like that—kind of puffy red eyelids—i thought it was normal for her because she is so fair skinned. her eyes are usually a little more puffy in the lower lids when she wakes up. they did a breathing test on her and he said she is showing borderline asthma—she couldn’t get the levels up where they needed to be.

he is starting her on an allergy med and will check her again in 3-4 weeks to see if it is helping and then sometime next winter we will move on to the stage 2 testing—needles under the skin. i’m glad he is paying attention to her symptoms even though nothing showed in the testing so far.

kind of a funny thing—i have some allergies, but nothing that is much of a problem for me. after sitting in the allergists office for 2 hours, i was starting to get a cough and my allergies were acting up.

also, jill—-i have atopic dermatitis, i have had it for most of my life and it doesn’t appear to be connected to any allergies—it’s just a skin problem.

molly was pretty rashy as a little girl, but it seems to have cleared up with age. tianna had alot of rashes before she was diagnosed with celiac. eliminating gluten has pretty much cleared up her rashes. rashes can be such a pain to figure out!!!!!

kevieb2008-09-05 16:02:57