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What Should I Do
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I am afraid. I am reading about how tricky it is to diagnois this disease. Is there an age that it might be undiagnoseable? My son is 15 mo old and they did the blood work to day and on Nov 3 we are doing an endoscopy and a colnoscapy and a dumping study. Is it better to wait or go ahead with the test. When my son was born he weighed 8lbs7oz and he is now only 19lbs15ozs. I am very confused adn don't know what to do. I have 5 children how do you cook with out putting the rest of the children and yourselves on the diet? He got sick at 3 mo old when I started him on baby cereal. I see alot of your children just like my son. Heelp I am despart for answers?

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Hello. Try not to be afraid. I know it is scary. My 19 month old doesn

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I'm not sure about doing an endo at 15 months......not sure it's bad, either, but just questioning how old one should be before undergoing slightly more invasive testing. I know I've seen posts about how young is too young for the endo; try a search.

I'm almost 14 and I have a nine-year-old brother (almost 10). I'm the only one in my family who has celiac according to bloodwork, though I think my mom has it cause she gets bloated after eating large amounts of gluten and my brother might cause he is REALLY skinny like I was....he weighs the same that I did at his age. Anyway, if you have five children, four of which aren't celiac and yourself...mabye a husband.....then it would be quite expensive to go on a gluten-free diet. People will tell you that you just need to avoid the special products, but that leaves you with Lays potato chips, a select few other mainstream brands, and then the basics (fruit, veggies, meat, etc.). While this is okay for adults, it isn't very child-friendly....anyway, I you don't need to put your entire family on the gluten-free diet. You do, however, need to be very careful about keeping all the foods and cooking things separated and making sure everyone in your family knows how serious this.

You'll need separate pots, pans, a toaster, and cooking things (spatula, whisk, etc.). You may not need all this right away, but you will eventually. Make sure that if you use one fork to stir some gluten-noodles, you do not use that same fork to stir something else or to feed your little one. If a knife goes into a jar of jelly or peanut butter or cuts butter, then touches a glutened food and double-dips, it has just contaminated the food. You'll read this all over, but it's important to be really scrupulous about this. Read around and you'll find some posts on cross contamination. I remember quite a few, but don't recall where they are on the board....a quick search should take care of that.

-celiac3270

P.S. Oh, I forgot to mention, keep a postive attitude....you'll get used to coping with the diet and however long it takes, eventually it will all fall into place. If it takes you a year to learn the diet and eliminate all the hidden sources of gluten from your child's diet, it's okay. You're lucky to have caught it this early, so if it takes awhile to work out all the specifics of the diet or if you mess up a few times, don't panic. :D

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lol... I'm one of those people who'd say you can just stick to naturally gluten-free foods. I guess my kids (years in the future) are going to be shocked when they get to school and see food come in packages. ;-)

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This is the worst part of diagnosis -- the waiting, the panic, the grieving, the worry. Consider yourself lucky that your doctors thought of celiac as a problem. It is also easier to manage a child's food allergy if they are very young. But a healthy life is precious, and worth the effort.

My advice is to go slow, don't read too much (it just gets so overwhelming to try and figure everything out and raise a bunch of kids) and do whatever works for you. For some people, that's "whole food" cooking. For some, it's everybody goes gluten-free (but that is very expensive if you are using prepared foods). Some people very successfully have a "split" household. For most of us, it's some combination of those depending on the day of the week and how much else we have to do.

My son has been gluten-free for 1 year, November. My husband is probably celiac disease as well, and it took us this long to think of half the family being gluten-free as a real problem. It's just part of the routine now. You're going to feel overwhelmed for a while, but it will get better. Take it day by day, activity by activity. You can do this!

Joanna

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    • I have posted on here before. DQ2, brother with celiac, DGP iGA was the only mildly elevated test. Was gluten-free so did 6 week challenge last winter. Negative biopsy. I am gluten-free now but do go out to eat. Prior to the challenge my health was good. Since then I have: Chest pain, pain between shoulder blades, periods of shortness of breath, heart palpitations, one instance of a heart arrythmia episode, neck is tender to touch on one side (they kept saying sinuses or TMJ which my dentist vetoed) ear ache, bowels never sink. Numbness and tingling. Blood pressure variations. Could be doing chores and feel dizzy and it might be 84/52.  not super low, but not typical for me if I'm running around the house.While other days I am mildly hypertensive. Recently lost 5 lbs in 8 days without trying. Recently electrolytes were low, alkaline phosphatese was low. Ferritin started dropping so started liquid iron 2-3 times per day 4 months ago. Primary watching that, I am not anemic but we are nowhere near iron overload either.  GI doc was a dick. Did not even know DGP replaced older tests and he was very condescending When I begged him for help recently and told me to get a second opinion which is exactly what I plan on doing.  I now have pain in my upper GI area. It is tender to touch. I had my gallbladder out in 97 along with a stone and infection in my bile duct. It hurts in this area. Pancreatic enzymes look fine, liver enzymes fine. Pancreatic ultrasound fine. I will now be doing a EUS Soon to look at bile duct, pancreas and liver.   so a typical day for me is that I might feel fine for a while and then suddenly feel like I'm going to pass out. really dizzy, numbness in odd places, like my body has been hijacked. I will typically eat a bunch of food something high protein and in about an hour or so I start to feel better. However, then my upper stomach starts to hurt in place of the passing out feeling. blood sugars are also normal. After getting the " it must be panic attacks" and condescending looks a million times my primary finally ordered an ultrasound of my sore neck and there is an abnormality in my thyroid which she says looks like possibly Hashti's. Except for one time, all my serum TSH tests were normal. We have more blood work on Monday. As I have not put on any weight and there are other symptoms that are closer to Graves.  Has anyone else had any thyroid issues that followed doing a gluten challenge?  where is your stomach pain? Do you have it above or below your belly button? Mine feels like it's in the pancreas area, like 2-3 inches above the belly button and when I push on it it's tender, but not all the time. sometimes i feel it in my back. 
    • Thanks for sharing with me.  I really appreciate it.  Honestly, after a glutening last summer (still do not know what glutened me), I did not eat out for a year!  The risk was too great as my healing time took 3 months (for symptoms to subside) and six months to regain lost weight.  Our recent vacation to Europe was worth the risk  as we traveled with our entire extended family, but we were extra cautious and ate only at celiac-approved places.  Otherwise, we "dined" at markets or ate the food we brought from home.  Thankfully, we did not get glutened (at least we don't think so!)  
    • I do not struggle with this and I was brought up the same way as you. I don't struggle because for many years off & on we didn't have a bathtub, only showers as well as this being therapy or medicinal for the skin - heck even for the muscles as I age. I figure I've earned my right to luxuriate or medicate with baths any time I've a mind to. My husband saw just how bad my dh got & NEVER begrudges me a nice long soak in the big soaking tub we now have.
    • Hi, No, I do not have celiac  disease. I have an ankylosing spondylitis which is an auto-immune disease provoking an inflammation of the joints. Under the advice and supervision of my doctor and the professor at the hospital I follow a gluten free & casein free diet, which is extremely successful in preventing inflammatory events. And I've been doing so, strictly, for more than 6 years. So I'm not Celiac, but I can tell you that I react strongly every time I take gluten even in small amounts. Even soya sauce, which according to this website has an almost zero dose of gluten, is a lot too much for me. Nevertheless I allow myself to eat food which has been processed in a factory which processes gluten. To conclude, I would say that when you are travelling, especially in a country where celiac disease is scarcely known, you should be twice as careful as when you're going out at home. In the end you can never guarantee that the cook has cleaned his pan after using soya sauce and so on... You can only bet
    • Along those lines, many Americans are now pursuing gluten-free eating. Gluten ... Diagnosis of celiac disease typically requires a history and physical ... View the full article
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