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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Stressed And New To Celiac
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7 posts in this topic

I so need to find someone out there that can explain this all to me its overwhelming me right now. Our eight year old was recently diagnosed with Celiac and Polyglandular Autoimmune Disease. She was in the hospital for a total of a month. Now I have gotten my results back and I too have Celiac, plus so do our two other children. I am stressed because I see no positive results for my daughter, while I still show no symptoms other than now the doctors believe my seratonin imbalance is a sympton of my having Celiac. Could there possibly be something else our Gastrointerologist have missed as daughter is still exhibiting huge mood swings, chills, and still looks quite emaciated even though we are eating gluten free. We have had to struggle with getting her to eat as they want her to consume 1500 calories daily and that is a huge battle for us. When we do get her to eat its like a starving person as she consumes so much that her stomach then gives her problems again. I am at a complete loss and somewhat scared as I see nothing positive only her getting worse. Can anyone help me?

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I know nothing about polyglandular so cannot say how that might still be affecting your daughter.

You don't say how long she's been gluten-free but people who have been really, really sick take a while to respond. I was in the hospital 11 days and missed 10 weeks of work, all because of celiac. I also had the chills (and night sweats), which is a somewhat unusual symptom, and I had them for at least six weeks. Mood swings weren't a problem, but this is a common symptom in children.

And make sure, if you haven't already, that you get rid of sources of contamination. Don't use old teflon pans, wooden utensils or cutting boards, or that old toaster. Clean out all the silverware drawers. If you have old condiments, peanut butter, butter, jelly, etc. where you might have spread bread crumbs from the pre-gluten-free days throw those out and start fresh. Those are just a few suggestions.

richard

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Those are great suggestions and I would like to add a few.

If she is not already dairy-free conscider it for at least a few weeks to give her intestines time to heal. Once you reintroduce dairy, use the lactose free products for a while and this will give her system more of a break.

If she is having trouble digesting you may want to give her a dose of digestive enzymes with her meal. This should help her get more nutrition out of her meal, since her intestines are not healed yet.

Get the whole house gluten-free as soon as possible. With 4 of you needing the diet it will be easier all around. This will eliminate the possibilities of anyone getting contaminated by the other gluten sources. If there is anyone left in the house who is eating gluten, try to get them to eat their gluten when they are out of the home and if they have it at home to be very careful NOT to leave any crumbs or packages lying about. Have separate shelves and LABEL everything that is gluten-free, so the kids know what is safe and what is not. At 8 years old your daughter is old enough to start learning to read her own labels. My 7 & 9 year olds are doing this, and it is helping them alot to understand what is in the foods they can't have. I always double check in case they missed something and point out the "hidden glutens".

Patience is needed right now. It is a hard road to start down. Everything seems like an uphill battle, but it will get easier. Be patient with yourself and your kids and understand that mistakes will happen. Don't get upset by them, just learn from them and next time it won't be as likely to happen. And remember to ask as many questions as you need to to feel better about an issue. We have all had to ask and there are no stupid questions. Even after years we are all learning new things everday about Celiac Disease. Welcome to the message board.

God bless,

Mariann

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I just wanted to add that we did not see much difference in our daughter at first, but after a few weeks her appetite came back with a vengence and she put on weight quickly. Untill then we mainly got calories and nutrition in using Pediasure. You didn't mention if you are using that (or Ensure or boost) but you might want to try. It seemed easy to digest. Ashlee is still off all dairy, I had head 6 weeks, so we are about to try easing it back in. We also noticed that oranges and orange juice seem to upset her stomach. There is some vitamin deficeincy that causes a small appetite, I think it is magnesium, and since the absorbtion is so damaged, it makes sense that it kind of takes a while for everything to get back in order. I hope things start changing quickly for her!

Michelle

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Thank you all so much I cleaned our cabinets and ridded our home of the old toaster and condiments didn't think about the spoons though that might have been cross contaminated also. I didn't think about the orange juice either though that is a good one. I also didn't think of bringing in magnesium as a supplement or digestive enzymes to assist also. So far we are on calcitrol, prevacid, zinc sulfate, calcium, leventhyroid and vitamin B. We found out about our first daughters Celiac in February, were in the hospital till mid March and have been home about three weeks now. We can't utilize any of the supplements like pediasure,ensure or any due to the sugar content, our daughter has a malabsorption with dairy and sugars if she has more than 17grams of sugar a day her bowels distend and create this gas that causes her to have cramping and diaherra again. I am keeping a food dairy also is that a good idea to continue with? Also do alot of the celiac children exhibit alot of gassiness? Our daughter does and we wondering if as time passed this would alleviate itself. We aren't using the bean flours so was curious about this.

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I noticed that my gas levels got much worse when I added supplements to my diet. The problem is, I

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I'm sorry to hear that your daughter has been so sick :( . Our whole family has been diagnosed w/ celiac disease or gluten intolerance. My son with other major medical problems was the first to be diagnosed. He had 70% of his small intestines, his ileocecal valve and part of his colon removed when he was an infant. He has had some major nutrition/absorption issues obviously, and I know how hard it is to see your child so sick. I was worried that it was taking so long for him to start grow after he started the gluten free diet. It took about 8 months for him to make progress and then boom ! he started growing. He has gained almost 3 lbs in just a few months, and he has grown about an inch too :) . He did start to feel better pretty soon and that went a long way towards increasing his appetite, and he does eat like he is starving a lot of the time now, and he is absorbing the food.

Have you seen a pediatric gastroenterologist who specializes in nutrition ? If you live near a major city, most Children's Hospitals will have one, and probably most major teaching hospitals would have one. The pediatric GI/nutrition specialist dr we see (who is not our 'main' peds GI dr) works in a failure to thrive clinic. Have you at least been able to see a nutritionist who specializes in celiac ? That has been really helpful for us.

Someone else posted about staying away from casein (milk proteins) for a while and it sounds like you are doing that, is that per the GI dr you see? All three of my kids (triplets) were casein free for their first 4 yrs. They can now tolerate casein well, after going gluten free.

Good luck with your daughter, I hope she is feeling better soon.

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    • Weird Reaction
      Thank  you Flowerqueen and Cristiana for your replies. I'm actually feeling much better today. I got my appetite back yesterday lunchtime (a few hours after I typed the original post) and managed to keep in/hold down some chicken and lettuce!!! I also had a "fat" coffee (as I call it) before work with MCT Oil and butter (your probably going "yuk" right now but it's really nice...really haha) and started feeling a bit better after that. The nausea went away almost immediately after that although just the thought of having all that fat nearly made me sick but I just wanted to get back to normal asap. I usually have a lot of fat in my diet anyway which is normal for me so the coffee choice isn't unusual. Plus it was also the third day which was when I started feeling better after the first time. I didn't eat til lunchtime and I was good and hungry by then so I knew I was coming out of it. That nausea and trembling feeling is something I don't want ever again. I think after the workout and tearing down muscle tissue (which is a form of stress) and then not being able to hold the nutrients in for repair affected my nervous system. My theory only but to me it makes sense. Although Vitargo also comes in flavors I always get the Natural / Unflavored one so the barley is the only ingredient. As for there being something wrong with that particular batch, well, you be on to something there. Also I'm not knocking the product because as I said, I have used it before and it did exactly what it was supposed to do. But, I will never have it again. Cristiana, my last blood test revealed I had slight anaemia which really surprised me with the amount of red meat I've eaten during my life and the anxiety thing is also new as I'm usually a happy, positive person. Life is good but after this recent reaction I think it is an indirect cause of the glutening. I'm also surprised at how sensitive I've become to it and how quickly. Also what is DX? I also follow a FODMAP eating plan (I can give you more info if you haven't heard of it) which also eliminates certain foods. It's a plan directed mostly at IBS but is well worth looking into if you are suffering any gut health, digestion issues or any ailment you may have which you can't get to the bottom of. Broccoli was one of the foods which I have cut back on and I've eaten HUGE amounts of broccoli so it is a superfood for some but apparently not for others. (I even think I read somewhere it has MSG naturally in it) It's hard to find any bad articles on broccoli so this also really surprised me. It also answered a few other questions I had. Many, many thanks again to you both for your replies. It actually settled me just reading them. I'm glad I found these forums so I don't think i'll be a stranger around here for long.   Richard
    • Confused
      Okay, I get that you are not going to follow the advice from some stranger on the internet, but please read the links that I gave you.  Your doctor is not following the standard level of care.  I am dead serious.  I have Kaiser.  My own GP doesn't have a clue about celiac disease, but my Kaiser GI does.  Please, I urge you to get properly diagnosed.  All celiac testing requires you to be on a gluten diet.  If you go gluten free even for two weeks (it will take time to get the referral and appointment), it will mess up the tests.  Your GI will put you back on a gluten diet (called a gluten challenge) for 8 to 12 weeks.    Chances are (almost 100%) you will feel more miserable!  That will just delay your diagnosis.   Symptoms not bad you say?  I had pretty severe anemia, but no tummy issues.  Two months after my diagnosis, I fractured my back DOING NOTHING!  Yep, I have osteoporosis from undiagnosed celiac disease and I am an athlete!   Please take this seriously!    
    • Silent Celiac or Non-digestive symptoms
      Oh, you might learn how to tell if you had been glutened.  I just had anemia as my main symptom.  I did not have any tummy issues at all.  I was in shock when my doctor even suggested testing me for celiac disease!   Glutenings can vary as we are all different.  For some it is just a few days, others a few weeks and others months (that would be me).  My last official glutening as supported by follow-up antibody testing lasted for three months.  Guess what?  I had vomiting, abdominal pain, the works!  Funny how celiac disease can change and evolve over time.   Welcome to the forum!  Have some patience and learn all that you can.  The good news is that you can feel better and no medications are required!  
    • Confused
      Thank you for the information. I've been not sure if I should eat gluten or not right now. Dr. said I should watch what I eat when I emailed him the question. My symptoms aren't very bad (I understand that doesn't matter for celiac disease), so I can definitley tolerate the food. But I have been starving myself the last few days due to not knowing what the heck is going on. Thanks again.
    • Could this possibly be related to celiac or a gluten intolerance?
      If you did actually have celiac disease, it can take weeks, months and years to recover from some of your symptoms, especially neurological ones.   Best to get screened for celiac disease.  It's a simple blood test.  Any medical doctor can do it.  But a GI doctor is needed for a diagnosis, since an endoscopy is part of the diagnostic procedure.  BUT you have to be consuming gluten to get accurate results! http://www.cureceliacdisease.org/screening/ http://gi.org/guideline/diagnosis-and-management-of-celiac-disease/ Keep on researching.  I wish you well!    
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