• Join our community!

    Do you have questions about celiac disease or the gluten-free diet?

  • Ads by Google:
     




    Get email alerts Subscribe to Celiac.com's FREE weekly eNewsletter

    Ads by Google:



       Get email alertsSubscribe to Celiac.com's FREE weekly eNewsletter

  • Announcements

    • admin

      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 Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
0
Minette

How To Make The Wait Easier

Rate this topic

Recommended Posts

Poor Sarah, who is 6, found out she had celiac over a month ago. After her bloodwork, we waited a month to see a pediatric GI close to us, but I was underwhelmed -- then we got a referral from a doctor friend to a pediatric celiac specialist at Children's in Denver, but still couldn't get in till June 1. So she can't go gluten-free for at least another month.

Her symptoms are not terrible (minor but frequent tummyaches, headaches, occasional joint pain, and moodiness which may or may not be related), and she's been living with them for years. But it feels cruel to keep telling her that giving up gluten will make her feel so much better, and then tell her that she has to stay on it for at least another month.

Will eating LESS gluten make her feel better in the meantime? (Not so much that it would mess up the tests -- but she eats tons of gluten now, so we could cut back without risk of that.) Are there any other things that might help her feel better physically, or ways to explain it to her so she doesn't feel so put-upon?

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


How certain is her celiac diagnosis? Have you checked with the office of the specialist and made sure she needs to keep eating gluten?

If she absolutely needs to keep eating gluten, you can explain that the specialist will help write a special note for school so her teachers will understand the diet, but that he needs to see that she is sick to write the note.

Share this post


Link to post
Share on other sites

I would think less gluten would definitely be better. I cut down on most wheat things when I first suspected a wheat "allergy", but did not remove all gluten. I felt SO MUCH better. Then my sensitivity went up after going fully gluten free to the point where tiny traces destroy me (I am celiac, not a wheat allergy like I originally thought). I think a lot of people work like this. I agree with Skylark. Check with the physician's office to make sure she has to remain on a gluten-free diet, and how much she needs to eat. I refused to continue eating gluten, had positive blood tests over a week after going gluten-free, and had visible villi damage a month after going gluten-free. But I was diagnosed at 23 and have likely reacted to gluten my entire life. My symptoms were too devastating to continue the gluten challenge. I hate that the gold standard is the biopsy... shouldn't improvement on a gluten-free diet be the real test? Oh modern medicine...

Share this post


Link to post
Share on other sites

If you KNOW she has celiac, why are you continuing to feed her gluten? I don't understand. What more can the expert in Denver tell you that you don't already know? Did she have a positive blood test and you're now waiting for a biopsy? If so, it's really quite unnecessary. False positives on blood tests for celiac are quite rare. You can pretty much take it to the bank that she has celiac if her bloodwork was positive. Please....she needs to stop eating gluten.

Share this post


Link to post
Share on other sites

If you need a diagnosis from the doctor, don't stop the gluten. If you've got a doctor (pediatrician or your initial "meh" GI) that will diagnose her based on the blood test alone then switch to gluten free. If you want to just go gluten free without a diagnosis, there is nothing stopping you.

I will say this. I had a lot more "power" at my daughter's school with an official diagnosis. There were some big-time changes made there and it wouldn't have happened without an official diagnosis.

I don't know how far you live from Denver, but if you've got the flexibility to get into the GI at a somewhat quick notice, I would call the doctor's office and get on their cancellation list. Tell them how much notice you would need (4 hours? 24 hours?) You may be able to get in much sooner.

Good luck.

Share this post


Link to post
Share on other sites
Ads by Google:


We were told we could eliminate up to a 1/2 cup pasta equivalent till the biopsy and the test would still be accurate.

Share this post


Link to post
Share on other sites

My son was diagnosed at age 5. We spent our waiting time (seemed so long!) trying out new foods each week so that when it came time to stop gluten 100% we were already ready with a favorite pasta, frozen waffle, etc. He also loves to cook so we did lots of cooking "experiments" making gluten-free treats and things. I think it helped him (and me) realize that there would still be lots of choices and lots of good food ahead of us.

The best thing that happened was when we joined the support group at our hospital (after diagnosis). A big box arrived in the mail full of gluten-free foods of all kinds (Children's Hospital, so lots of the food samples were cookies and snacks) He was thrilled and his brother was so jealous.

Two books from the library helped a lot too:

"The gluten-free Kid" (sort of comic book made by a kid with celiac disease) and "Eating Gluten Free with Emily" (describes endoscopy and coping with diet at school and play dates).

Good luck - the waiting is hard but it will be over before you know it. Be thankful the symptoms are mild.

Cara

Share this post


Link to post
Share on other sites

How certain is her celiac diagnosis? Have you checked with the office of the specialist and made sure she needs to keep eating gluten?

The diagnosis is pretty certain, but the specialist's office said she should stay on gluten until we see him, in case he wants to do a biopsy. If he decides a biopsy isn't necessary, we'll stop gluten right away. They also said that if he does want to do a biopsy, hopefully we won't have to wait more than a few more days.

I do want to have an official diagnosis. She has years and years of school, camp, college, etc. ahead of her and I don't want it to be "Mom says she can't eat gluten" -- I need a piece of paper with a doctor's name on it.

My son was diagnosed at age 5. We spent our waiting time (seemed so long!) trying out new foods each week so that when it came time to stop gluten 100% we were already ready with a favorite pasta, frozen waffle, etc. He also loves to cook so we did lots of cooking "experiments" making gluten-free treats and things. I think it helped him (and me) realize that there would still be lots of choices and lots of good food ahead of us.

The best thing that happened was when we joined the support group at our hospital (after diagnosis). A big box arrived in the mail full of gluten-free foods of all kinds (Children's Hospital, so lots of the food samples were cookies and snacks) He was thrilled and his brother was so jealous.

Two books from the library helped a lot too:

"The gluten-free Kid" (sort of comic book made by a kid with celiac disease) and "Eating Gluten Free with Emily" (describes endoscopy and coping with diet at school and play dates).

Good luck - the waiting is hard but it will be over before you know it. Be thankful the symptoms are mild.

Cara

I am definitely thankful for this!

We have "Eating Gluten Free with Emily," but so far she's refused to look at it. I think it makes her feel self-conscious. She's interested in talking about celiac and whether things are gluten-free or not, but for some reason the book just makes it feel too formal.

I've also been trying out new foods, but so far they've all gotten a "thumbs sideways" (her version of something in between "thumbs up" and "thumbs down"). I think I need to get more creative with this and make it a game or something. Maybe I could give her a little "rating book" where she can write down everything we try and give it a grade.

The support group is a great idea -- I'll have to see if our Children's Hospital has one!

Share this post


Link to post
Share on other sites

I like the food critic idea - my son would enjoy that - maybe create a kid's blog or something.

One last suggestion: when we started out, we simply found acceptable gluten-free alternatives for the food we were currently eating instead of changing the way we eat. This was fine for my very active son, but I quickly put on about 10 pounds. The gluten free baked goods and pastas are really quite empty of nutrition and full of starchy carbs. Now, instead of just swapping regular cereal for gluten free cereal, we are trying to move to other breakfast items (scrambled eggs, fruit and yogurt smoothies, etc.) His school lunches are more "bento" style rather than a standard sandwich on gluten free bread. You get the idea. I think this will help in the long run too - gluten-free specialty food is expensive and sometimes hard to find when traveling. Now that he is used to rice instead of gluten-free pasta, he seems more flexible and easier to feed.

Working for me too . . . a pound or two of gluten-free flab is coming off each week.

His favorite "new" breakfast is the "1 minute flax muffin" (just google it - very popular with low carb dieters). We use real sugar in ours, and add chopped fruit (today was apple, yesterday banana) and serve it with vanilla greek yogurt drizzled on top like frosting. I make them in a ramekin so they are shaped more like a muffin or cupcake. Now, everyone in the family is eating it . . . not just us gluten-free people. It is pretty good.

Cara

Share this post


Link to post
Share on other sites

This is exactly what we are going through with our 3.5 yr old. His blood work came back positive, but we had to WAIT to see a ped GI and now we are WAITING for our endoscopy. I feel so guilty as a parent feeding my son food that makes his belly hurt. Glad to know I'm not alone. Luckily our endoscopy has been scheduled for next week.

Share this post


Link to post
Share on other sites


Ads by Google:


I will say that my wait for the GI appointment was a LOT longer (months) than my wait for the endoscopy (a week). Of course, while we were waiting for the GI, we didn't know what the heck was wrong so we weren't left with the same kind of dilema of knowing what will fix it and having to wait to start.

Something that may or may not help with the symptoms . . . you could have her take a digestive enzyme and/or lactaid pills with dairy.

Share this post


Link to post
Share on other sites

That 1 minute flax muffin sounds great! What a good idea. Plus, she actually eats muffins and is reasonably flexible about what's in them as long as they're basically sweet. And it puffs up on top if you make it in a shorter container? It was a little unclear from the picture I found, whether the consistency would be solid like a muffin, or more like a molten chocolate cake.

I've never bought flax seed meal in my life, but I'm going to try this! (I assume that's different from ground flax seed... or not?)

Share this post


Link to post
Share on other sites

Ground flax = flax meal. We buy Bob's Red Mill.

We've been making a different "flavor" every day. I think I will take your idea and have my boys rank them best to worst. (but they have all been good.)

They are a weird texture . . .when warm, more like a cross between a muffin and bread pudding. When cool, they are like a very dense muffin. Not light and cake like at all. So far we've done pear/cinnamon, apple cinnamon, and chocolate/zucchini. Tomorrow is chocolate/banana . . . Comes out of the ramekin like a muffin/hockey puck. (Thats why we did the "frosting" on top . . . made it much prettier.) Be warned: there is lots of fiber in flax seed. Only eat one a day (my boys wanted them for snack and lunch too . . .)

Also - I subbed applesauce for the oil (since I'm not trying to reduce the carbs) and it worked perfectly.

Share this post


Link to post
Share on other sites

I agree with a lot of what the others said: the wait for the GI felt really long, esp. since we had a positive blood test and kind of knew we would be going gluten-free. But I did want a diagnosis in hand for school/camp/etc.

We spent the wait time testing out recipes for things like pizza crust, birthday cake (one of my son's had a birthday right after the endoscopy), pancakes, etc. Some were miserable failures and I let my kids give me their honest feedback. When we did hit upon recipes that worked, they were clearly thrilled. By the time we had to go completely gluten-free, we could make pizza, pie, muffins, pancakes, etc. It made the transition a little smoother because some things worked and the boys were in the right mood to realize that mom was floundering a bit here and in "testing" mode. They didn't expect perfection.

Share this post


Link to post
Share on other sites

Hi Minette,

I know-the wait is terrible. I did one thing to ease my mind in terms of the kids: I made gluten free dinners. One of my girls' joint pain improved a bit.

I did a lot to make myself feel better: I started cleaning! I put all things with gluten in a box in the corner of the kitchen...I cleaned cabinets...I researched for a new toaster...I put together a gift basket for each girl to give them after their biopsies...somehow all that activity helped me.

Also, you might try calling the doctor every week to see if there is a cancellation.

Thinking of you!

Share this post


Link to post
Share on other sites

I tried the 1-minute muffin today. Amy and I both tried it and agreed that it had no flavor except for the banana, but we have some improvements to try next time. However, I put it into my calorie counter and it has 356 cal -- that's twice as much as I normally eat for breakfast! So from now on I'll have to just eat half.

This weekend I'm going to try some gluten-free muffins (with baking flour, not flaxseed) so we'll have some in the freezer when the time comes.

Share this post


Link to post
Share on other sites

In addition to mamaupupup, I would like to add, that you may want to gather all the gluten items and eat them all up, before your kiddo actually has to go glutenfree. It would be beneficial, if the entire kitchen would be glutenfree to prevent cross contamination, especially at the beginning. Another benefit of that would be, that you may see, if other family members may be affected by going glutenfree and have issues disappear that you never even know you had before. It happens very often as celiac is hereditary.

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

0

  • Forum Statistics

    • Total Topics
      108,922
    • Total Posts
      943,520
  • Member Statistics

    • Total Members
      67,126
    • Most Online
      3,093

    Newest Member
    IgdaliaC
    Joined
  • Popular Now

  • Topics

  • Posts

    • I know-pretty dumb. I'm usually very careful. I didn't check into it. Thanks for reply. DebLee
    • LexieA, This thread might help you. You say you never have "heartburn/GERD". You can have something called Silent Reflux. It  could also be NERD. some of these links are in this thread but I will post some releavent information in this reply as well. here is a good overview of the difference in this fox news article. http://www.foxnews.com/health/2012/11/13/gerd-or-nerd-new-type-acid-reflux-doesnt-respond-to-drugs.html but if your throwing up it is probably from Bile Relfux. . . . instead of acid reflux. I actually wrote a blog post on celiac.com about these conditions. the NYTimes article called Bile Reflux a "Shadowland" in Medicine and part of the reason for the title of the post. here is the NYtimes article about some of the issues you are describing. http://www.nytimes.com/2009/06/30/health/30brod.html throwing up is actually a protective reaction. and this normally protect us from poison's or food poisioning etc. but when our biofeedack loop is broken down like having bile in the stomach instead of the small intestine . . . it can be hard to break this cycle. The green portion is probably the bile portion. It is actually very caustic as Plumbago pointed out.  this would/coul scald our insides (lower GI/Small Intestines). Normally stomach acid is neutralized by bile after it leaves the stomach . .. not while in the stomach. I wouldn't never recommend anybody do this on purpose . .. but if you are already puking your food up then simply buy a pH test kit. testing your food/chyme/puke (food outside the body) you will quickly get an idea of how acidic/basic your food chyme (digested food) is. It will almost be a pH of 4.0 or more. the paleo nurse explains this well why strong stomach acid is important to your health. http://thepaleonurse.com/the-truth-about-stomach-acid-why-low-stomach-acid-is-jeopardizing-your-health/ quoting the paleonurse. "In the infinite wisdom of the human body, the stomach was designed to produce the acid that is necessary for proper digestion of food.  When functioning properly, the parietal cells of the stomach secrete hydrochloric acid that bring the stomach pH to a range of approximately 1.5 to 3.0" if it is a higher pH than this you can benefit from taking BetaineHCL to restore your stomach acid to more natural level. . . especially if you are not already taking PPI's since a proton pump inhibitor is lowering stomach acid. .. . by their very ability to cut off almost all stomach acid production. **** this is not medical advice I only know taking powdered stomach acid (BetaineHCL capsules)  helped me. I was not barfing my meals though. . . so your experience my be different. Maybe Ennis_tx will comment because he has some of the same symptom's/issues. But if I was puking I think I would be curios to know what my pH really is? And not Assume? anything at this point. If you test your stomach pH with easy to buy pH strips you will know whether it really is high pH (low stomach acid or a little stomach acid as your describe it) or low pH (really high stomach aid) that is causing the issue's. Once you know for sure you  will know who to go about correcting it. Supplementing with BetaineHCL is fairly harmless . . .unless you have an ulcer. And you will/would probably know it instantly if you take some BetaineHCL and it feels like someone is putting out a cigarette in the middle of your stomach.  It is acid burning your sore/ulcer. thankfully eating protein/food quickly neutralizes/raises stomach acid especially when taken with a glass of water. staying hydrated with a meal also helps improve digestion so be sure to take some water/drink like a tea or juice etc. for example if you want to the BetaineHCL to work properly. Milk has the opposite effect.  If you feel a burning milk can coat the lining of your stomach helping to erase/ease the effect of strong acid. And why people who eat hot **** five alarm peppers aka known as Hot heads keep milk close by if they need to dampen the fire in their stomachs from eating too many peppers. . . . and drinking water can aggravate this practice of eating the hottest peppers you can find. I hope this is helpful. I have rambled on long enough. be sure to read the sickboy user in the medhelp thread of how he helped his GERD/bile reflux. here is medhelp link for easy reference included in the "silent reflux" thread if you haven't read it yet. https://www.medhelp.org/posts/Gastroenterology/UNCONTROLLABLE-BILE-REFLUX-PLEASE-HELP/show/738242?page=1 he was suffering for 5 years and got better so don't lose hope. It can seem very daunting but people on this board do get better. we have used different methods but people do get better. again this is not medical advice just things that have helped me. good luck on your continued journey but it is not a long way back if you know the way. 2 Corinthians (KJV) 1:3,4 3) “Blessed be God, even the Father of our Lord Jesus Christ, the Father of mercies, and the God of all comfort; 4) who comforteth us in all our tribulation, that we may be able to comfort them (sufferer still suffering)   which are in any trouble, by the comfort wherewith we ourselves are comforted of God.” posterboy by the grace of God,    
    • LOL sorry but really? You trust that, dominos, papa johns, and pizza hut ALL say they can not 100% guarantee their gluten-free pizza are celiac safe. THEY USE the same prep areas, same ingredient bins, same ovens and in many cases the same cutters and spoons used to spread the sauces and cut the pizza. I doubt the employees would even bother changing gloves between pizzas during rush.   Seriously if you want a gluten free pizza....gut a premade one in the freezer section from UDI, Dayia, RealGoodPizza or a crust from cappellos or califlower foods and make your own....Here please save yourself here is a list. BTW Pizza hut uses UDI crust and just tops them with their sauce etc....CCing in most cases and delivering them. Also the REAL good pizza will mail you cases of their pizzas fully made. Califlour foods and capello will mail you empty crust by the case. SO you can order them if  local stores do not carry them.


      http://udisglutenfree.com/product-category/pizza-crust/
      https://daiyafoods.com/
      http://iansnaturalfoods.com/products/gluten-free-cheesy-french-bread-pizza/
      https://www.geefree.com/collections/all/products/cheese-pizza-pocketshttps://cappellos.com/collections/pizza
      *^Grain Free Pizza crust to make your own with using eggs, coconut and arrowroot for a base crust blend. The Naked pizza crust is dairy free. Order frozen by the case and they ship them to you.
      https://realgoodfoods.com/productpage/
      *^Grain Free Pizza They use Dairy Cheese blended with chicken breast to form personal pizza crust. You can order them frozen and shipped to you. NEW PRODUCTS they do Enchiladas NOW
      https://www.califlourfoods.com/collections
      *^ This is the only one I buy, grain free, low carb crust, and the plant based one is great, NOTE these make a New york style flat crust, I use 15 min prebake before adding toppings to make them extra crispy
      http://glutenfreedelights.com/our-sandwiches/
      ^Gluten free hot pockets? YES they make them for when you need the old instant hotpocket, odd craving but I know they hit sometimes.
      CRUST MIXES Grain free
      https://www.simplemills.com/collections/all/products/almond-flour-pizza-crust-mix
      https://julianbakery.com/product/paleo-pizza-crust-mix-gluten-grain-free/
    • My MRI has been clear. They did a spinal tap back in May which was also good.  MS ruled out many times. All my symptoms match Gluten Ataxia, but I don't know for sure since I don't have a dx. However, I DO have Hashimotos so at least going Gluten Free is necessary for that. I go to my Rheumatologist on Jan. 30th, 2018. Can a Rheumatologist determine Gluten Ataxia? If so how long should I be back on Gluten for testing?  Thanks for the heads up on Free and Clear products. I will look into that.
  • Upcoming Events