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sarahelizabeth

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  1. Does anyone have a yummy breakfast/brunch casserole or likewise recipe to share?? My dad is newly diagnosed celiac and they are staying over for Chrsitmas morning. I don't have a whole lot of time to experiment unfortunatley so I am looking for something tried and true!

    I do have a son with celiac so I am used to cooking gluten free... the problem is he also has multiple food allergies so he's FAR more restricted then my dad. Plus he's picky and won't eat most combination foods... or anything that normally an adult would want to eat.

    Any help would be appreciated!! TIA!!


  2. Hmmmm... I am only using the rice milk for cooking but perhaps I still need to find another alternative. He drinks a specialized elemental formula for his "milk" but I still need something to make him pancakes or waffles. He doesn't eat those very often... actualy only Saturday mornings... but still.

    Most of what he eats is naturally gluten-free... fruits and meats... but he does eat some prepackaged labeled gluten-free things. Most of them are Enjoy Life because of his other allergies... its hard to find gluten-free, milk free, soy free, and nut free things. So far we've had no problems with Enjoy Life... has any one else??


  3. Did they do an upper gi scope?? Going formula only sounds like a treatment for an EOS and not celiac.

    My son takes Petamen Jr for milk/soy allergies and failure to thrive. Its been a GODSEND for him.

    ETA... we live in Cols area and go to Nationwide. We've been veyr happy with my son's care there but if you are looking for a second opinion I've heard GREAT things about Cincinati.


  4. I've been on and off this site over the past 3 years as we've tried to figure out my son's issues... and here I am back again begging for some help!

    My 3.5 year old son has had chronic constipation since nearly birth (started at about 6 weeks). He's been on double the adult doses of Miralax since he was 7 months old and still would completely back up. He was diagnosed with dysmotility, reflux, and failure to thrive (more then once actually)... as well as a huge handfull of other things (including autism, global developmental delays, multiple regressions, severe hypotonia, ketotic hypoglycemia, chronic ear infections... tubes x3, probable metabolic disorder, and he had a muscle biopsy done last month to look at mitochondrial disorders). When he was 20 months old our regular pediatrician ran a celiac profile which everything came back normal. Then 3 months ago his GI Dr brought it back up again claiming that blood testing is notoriously inaccurate in children under 6. He contemplated doing biopsies but we decided against it as my son reacted very poorly the last time he was sedated. He suggested we do a gluten free trial for 2 months then reintroduce gluten and remove it again and see what happened. He said he would have suggested the trial regardless of the biopsy results so ultimately it made the most sense to just do the trial.

    At the time we started the gluten free trial my child was refusing to eat. He was refluxing so bad that his entire body would stiffen up and he'd arch his back crying. He was constantly having swallowing problems... to the point that he was bringing food back up and having to reswallowing it. He was so constipated that he couldn't poop on his own. The GI said he figured his entire GI track was swollen, reddened, and inflammed based on those symptoms. Oh, and he'd fallen off the growth charts... AGAIN!

    When we started the gluten free trial I didn't notice any difference until about 3-4 weeks in... and it was very gradual. We ended up going about 10 weeks (instead of "just" 2 months) because of the holidays and a few other thing going on. He eventually started sleeping less (he had beel sleeping 16+ hours a day) and FINALLY started eating and gaining weight. He was still constipated... but we got his Miralax down to a resonable dose... and he was still refluxing but it was managable on Prevacid. Overall he just seemed like he felt better finally. Is it normal not to notice an immediate difference when going gluten-free... or is that unusual??

    Well this Monday we reintroduced gluten and everything went down hill. He's spent the last 5 days crying, tantruming, falling down, and having EXPLOSIVE diarrhea. He's NEVER in his life had diarrhea so I am confused. If gluten caused all the constipation problems all along then how could it be causing diarrhea now when we reintroduced it?? It has me second guessing wondering if he's coming down with a virus or something??

    Oh... and his skin is all broken out. Now mind you he's got horrible skin to begin with... terrible KP (worst that either our allergist or dermatologist had ever seen), eczema, and a history of MRSA skin infections. Well since the gluten intro he's got pustules all over his legs again... here's a picture...

    IMG_0164.jpg

    What do I do?? Keep him off gluten... or keep trialing to make sure its not an illness??


  5. My son is milk/soy/peanut/tree nut allergic... it really limits what he can eat.

    1. Milk replacements? Right now he's on an elemental formula because he was failure to thrive and had major GI issues so that is his "milk" currently.

    2. Butter replacements? There are a few milk/soy free "butters" out there but they are hard to find anytime other than passover but Mother's Margarine (only the passover version) and Migdal are both made from cottonseed oil. Spectrum works for baking except crumb toppings. Lately, I've just been using recipes that called for oil or applesauce instead of butter/margarine myself.

    3. Yogurt replacements? So Delicious Cocount yogurt is milk/soy free and quite yummy

    4. Cheese replacements? haven't found a remotely palatable one

    5. Ice Cream replacements? we stick to sorbets

    6. Any other dairy product replacement?


  6. Just be aware that you may also have to eliminate all dairy and soy, at least for a while, until everybody has healed, as those can hinder healing (as well as cause villi damage on their own).

    Thank you for your response!! My younger son is already milk/soy free because of food allergies. He takes elemental formula for supplemental nutrition for borderline failure to thrive. So making the rest of us milk/soy free for a while wouldn't be tough. Going gluten free however sounds SOOO overwelming to me with all the other food allergies we are dealing with. I am sure its not really (I thought milk and soy would be and its not bad). I've been contemplating going gluten-free for a long time... perhaps I just needed a good shove in that direction.

    One question though... should I leave him on gluten and have him tested first?? Or just trial gluten-free?? My older son goes back to the GI mid-August and my younger son goes back in the end of August so not much longer.


  7. I was on this site 2 years ago looking for answers for my younger son who ultimately tested negative for celiac at 20 months of age (although STILL has bowel issues now at over 3 but I digress). Now I am revisiting the idea with my older son who is now 5. He's been complaining of intermittent stomach pain for over 1.5 years now. He's been treated for reflux with only some relief from the pain. Our ped finally referred him to a GI Dr last month who ordered a bunch of blood, urine, and stool tests, as well as an upper GI with small bowel follow through and an abd u/s... all of which has come back normal. He claims that this must not be reflux otherwise the meds would have helped. He mentioned testing him for celiac but decided not to when I said both my younger son and myself tested negative via blood tests. Now I am wondering if that was a poor choice?? Should we consider having him tested??

    We are quite perplexed with where to go with the normal testing. He's lost 3.5lbs in the last 6 months and isn't growing in height at all. He's gone from the 50th percentile in height when he was 2 down to the 5th-10th in height now at 5.5 years old. He has very mild constipation issue (not even worth treating) and doesn't have issues with diarrhea, bloating, or gas. He does run a chronic low grade temp... his normal body temperature is 99.7-100.2 orally. I should add he's got an Asperger's diagnosis... and has issues with anxiety (talk about mood swings... YIKES!!) .

    I guess my question is about stomach pain... where is it "usually" located?? My son complains of very high stomach/chest pain (like you would think for reflux). Is that in any way linked to celiac?

    Also, does testing for inflamation like sed rates usually come back positive in kiddos with celiac?? My son's was TOTALLY normal (as was his cbc, crp, lipase, amylase, ua, stool guiac, and all stool cultures).


  8. This has been 2 years in the making but I think we are finally going to trial a gluten free diet with my 2.5 year old son. He's had constipation issues almost since birth... we tried every dietary measure known to man without luck and finally had to resort to Miralax daily when he was 7 months old... he's been on that ever since and can't poop without it.

    We saw a ped GI when he was 8 months and then again at 12 months. He was fairly certain that his bowel issues were allergy related so we went to an allergist. Turns out he's allergic to peanuts, tree nuts, soy, and a handful of other "minor" foods. He's had those eliminated from his diet completely since he was 20 months old.... so for 10 months now... and there's been no change in his constipation.

    He was tested for celiac (just ttg I believe) at 20 months and it was negative. Ped did that because of excessive sleeping he was doing at that age in conjunction with the constipation. She did say he was a little young to get an accurate test though.

    He's small... always has been... even dropped off the charts for a while but is now comfortably back on them at around the 25th percentile for both height and weight... although height is starting to fall off (his feet haven't grown in size since January). He's definitely got a bloated little belly on him. Horrific smelling bms and gas and severe constipation. I've had enough... I am ready to try gluten free regardless of bloodtests at this point!!

    He's the problem though... with the soy and nut allergies how do I feed him?? When I looked at most of the gluten-free foods at Whole Foods they almost all contained soy or nuts or where processed on a plant with them!! EEK!! Is it possible??


  9. Everything came back negative for celiac.

    Antigliadin Abs, IgA: <1 (0-4 normal)

    Antigliadin Abs, IgG: 3 (<9 normal)

    t-Transglutaminase (tTG) IgA: <1 (0-3 normal)

    t-Transglutaminase (tTG) IgG: 2 (0-5 normal)

    Endomysial Antibody IgA: Negative

    Immunglobulin A, serum: 125 (70-400 normal)

    My CBC was totally normal too... hgb was 14.4 so no anemia. Thyroid panal was completely normal too. The only things my Dr considered abnormal was my blood sugar was 110 BUT that was NOT fasting (he thought it was)... I ate a good sized breakfast before going in so that is still normal... and my cholesterol was high :blink: I guess I should have figured that... need to work on lowering that!! :rolleyes:

    His notes say that celiac is unlikely. He didn't say anything about seeing the GI Dr which he had originally referred me too for the scope. I am thinking at this point I will pass. The blood tests weren't even borderline so I am not sure there is a point of going through all of that. If I am still feeling bad down the road then maybe I will do it then but it seems like a waste now.

    Honestly I am very surprised. I've been SOOOOOOO fatigued I thought for sure at least I would be anemic!! I still have no explanation for the stinky floating stools, IBS symptoms (not all the time though... they come and go), lactose intolerance, AWFUL gas :unsure: 20 cavities in the past 4 years, frequent headaches, etc. :blink:

    The worst part is this doesn't give us a reason to soley pursue celiac in my oldest son who has stopped growing. Now the Drs are going to want to do all sorts of other testing on him to figure out the cause and I was REALLY hoping to avoid that for his sake :(


  10. Hey everyone!

    My youngest dd was recently taken off the bottle. She is 13 months old. When she was about 1 month old, she developed bloody diarrhea and was put on Alimentum formula and diagnosed with a milk protein allergy. Then she was having a reaction (though not as severe) to the formula because it had corn in it (we are pretty sure of this at least).

    Fast forward a year, and we were given the ok to feed her whatever we want. She again had diarrhea, but not bloody. We gave her whole kernal corn the other night, and she had bad diarrhea the next day. Now she has a bad, bleeding diaper rash. And she has been so grumpy.

    So my question is, what can I feed her? I went out and got more Alimentum, and I gave her some bananas for breakfast. I just don't know what to give her. She is always so hungry. She hasn't been diagnosed with Celiac, but we don't have any gluten in the house. So I am already so limited in what to give her. I am so lost right now. Someone please help me! I don't know what I can feed my child, and I just want her to get better.

    Thanks,

    ptkds

    We have lots of food allergies here :(

    Alimentum still has milk proteins in it... they are broken down significantly but they are still there. Something like 10-20% of children with milk allergies will NOT be able to tolerate Alimentum. So that might have been part of her problem... she didn't react as badly becuase it was broken down but her body still recognized tht it was there. So it might have been milk all along and not corn at all. A good number of milk protein allergies are outgrown by a year. Have you tried her on milk again??

    Corn is very difficult for anyone to digest let a lone babies and whole kernal so diarrhea doesn't surprise me. Did she have any other syptoms... rashes (besides diaper), respitory issues, etc?? I wouldn't necessarily think allergy right away unless she had other symptoms. Maybe try a smaller dose of corn... something other than whole kernal and see if she reacts again??

    Have you had allergy testing done on her?? Might not be a bad idea to see whta you are dealing with.

    Will she eat rice... my kids loved making a mess with rice at that age. Gerber wagon wheels?? Little Einsteins or Dora cereals? Both my kids loved diced fresh fruits and veggies at that age... especially melons (cantaloupe, honeydew, etc), pears, bananas, apples, peas, carrots, green beans, and sweet potatos. You can do hambuger, chicken, ham, turkey, etc... all cut up small for her to pick up and feed herself. Scrambled eggs is another good protein option. HTHs some!!


  11. I had these symptoms for 24 years, I had my son 2.5 years ago and they think that was my "triggering" event for teh celiac. My son tested Negative(blood test)....I am going to go totally gluten free at home, but he will still get gluten at daycare. He has NO syptoms. Again this is personal choice!

    I am having the test done, if he has the gene(I do realize if he doesn't have the gene it is still slighly possible for him to still get celiac.) I will probably start him gluten free at daycare too. Just to be safe. I don't want him to worry about osteoprosis at 24 like I have.(more likely for females but still possible for him). If you're child is testing negative....it's up to you and what you think is right for your child.

    That is interesting that you say having him was your triggering event. I really did notice an increase in all of my symptoms after having my first child. I had a c/s with him after 17 hours of labor and ended up with a mild illeus after surgery. I always attributed my increased bowel troubles to that illeus... but maybe it was more. Interesting... very intersting!!

    Honestly I think a lot of our decision to put Matthew (my youngest) on the gluten-free diet may come from whether or not his older brother tests positive.


  12. I am curious how much genetic testing really tells you about celiac. From what I am gathering here there's a large percentage of the population that has celiac genes and are not necessarily celiac?? What is the point of paying for the testing if its not telling you anything for certain??

    I ask because our family is currently going through testing. My youngest son was tested about 2 months ago because of GI and growth issues and came back negative. My older son is going to be tested in two weeks because of growth delays (he hasn't grown at all in the past year and has dropped from the 50th percentile in height at age 2 to the 25th at age 3 down to the 10th at age 4 and how he's hoovering around the 5th percentile at 4years 4 months) and chronic ear infections but has no bowel issues aside from occasional constipation. I went in to the Dr's yesterday and was tested primarily becuase of my children's history BUT I do have long history of IBS symptoms, infertilty, headaches, dental problems (20 cavities since having my first child 4+ years ago), chronic fatigue, etc (could go on)... of course any one of those symptoms can be explained by something else and doesn't **have** to mean celiac. I am still waiting for my results.

    I look back at my youngest son who is showing the most clear symptoms right now but came back negative and wondered if genetic testing would be prudent but now I am wondering if there is a point? Do I request to have him tested again in the future?? Or just put him gluten-free and not worry about the diangosis (but what does that do to him later in life??) I just don't know what to think.


  13. He sounds wonderful!! What a dream. A knowledgeable doctor, WITH strong opinions in our favor.

    There's a Doctors section here. If you could do a new post in that area and let us know his name and location, it could be helpful to others in the future. Sometimes that's the hardest part about the pre-diagnosis period. Doctors are getting better, but it's still such a crapshoot. There might be someone else in your area who is looking for a doctor.

    Nancy

    Honeslty I am not sure how much he knows about celiac per se... he had to look up the whole panel of blood work before he ordered it becuase he says its not something he does very often. I just think he was a good Dr in general... not willing to just sit back and make a "junk" diagnosis.


  14. I took the plunge and went to the Dr today and requested to be tested for celiac. :blink: I have to say the Dr was awesome!! He was referred to me by my inlaws who have VERY different opinions of medical professionals than I do. :rolleyes: I'd only seen him once before for eczema related issues and he'd left no major impression on me one way or another. Well I went in today and told him my symptoms and that both of my children were being tested and he immediately ordered the tests no questions asked.

    He even said whatever Dr had labeled me with IBS years ago should have tested me then. :o He said that IBS is a crap diagnosis that just allows Drs to quit thinking!!! He referred to it as a "land mine" diagnosis saying that you can be fine for years and then BAM something serious pops up that had really been there all along and you ignored it under the disguise of "IBS" :o Totally shocked me to hear him say that!!

    He drew about a pint of blood I swear (did full celiac panel as well as CBC, Chem 12, thyriod functions, and a few others just to be thorough) and referred me to a GI specialist. He said even if the blood work comes back negative he wants me to get a biopsy anyway.

    I was totally amazed... I was expecting to walk in there and have him brush me off and be a real jerk like most Drs are... but he wasn't he was AWESOME!!

    So now I just sit back and wait for the results... he said it could be 7-10 days before we hear back since those tests aren't run everyday. :blink: Man I hate waiting!!


  15. Before I go complaining to a Dr about this I am just wondering if this could be celiac related or if its just in my head ;)

    Everytime I eat a heavy gluten meal (like ravioli tonight) I itch... my hands, elbows, bottoms of my feet, knees, and back of my neck, and sometimes my head too... they all itch like crazy for a few hours. :blink: am I nuts?? There's nothing there... no rash or anything... it just itches.

    I have a bunch of other symptoms (and one child who has been tested for bowel issues and anotehr who will be tested for stunted growth) and am trying to get up the courage to go ask my Dr for the test. I've had IBS for years but it got tons worse after having my first child. My poop floats... honestly I don't remember a time that it didn't :blink: and it often sticks to the sides of the toilet (sorry tmi). I have HORRIBLE gas and bloating (sorry tmi) to the point of being woken up in the middle of the night in pain. I get head aches/migrains all the time. I am chronically fatigued to the point of needing a daily nap. I've had infertility problems (needed drugs for both pregnancies). I get mouth sores regularly and I've had 20 cavities in the past 4 years after having NONE before that. The list could go on :( The only thing is that I am overweight and not under by any means :(

    Honestly I am almost afraid to know... I know I should go in and ask for the test but it scares me... stupid I know (please don't bash me for that). I just need to kick my butt in gear and go and ask for the tests.