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New To Gluten-Free
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Hi everybody. We are brand new to attempting to eat gluten-free and I have no idea where to start! Let me give you a little background to how we got here.

I have a son who is now 4 years old. We have struggled with constipation and other bowel issues since he was born. He has struggled a lot with potty training, but only with bowel movements. I decided to figure out what was wrong this last year as he would cry while sitting on the toilet that his 'poop was stuck' and beg me to 'get it out' for him. Basically, my son has one bowel movement a day, however, if he misses his daily BM, he becomes constipated.

We ended up at the ER this year because he was so constipated he was crawling around the house crying that his poop was stuck and it hurt, but he couldn't pass it. We talked to our local pharmacist and gave him an over the counter suppository and lots of Miralax. By the afternoon, there was still no change so we took him to the ER. Ironically, while waiting to see the ER doctor, he stopped complaining and crying. My son has a very 'oppositional' temperament and didn't want the doctor to touch him, so he was constantly wiggling around and wouldn't let her feel his belly. Basically, she sent us home and said he was fine. Once we got home, he again went back to crying and crawling around. Finally, he passed the largest stool that I had ever seen come out of a person. I joked with my husband about bringing the stool back to the ER doctor and leaving it for her with a note that said 'not constipated?'

While talking with a friend, she mentioned that milk and other dairy plugs her children up and I should try to take him off of dairy to see. I mentioned it to my doctor and he told me that he didn't believe my son has a milk allergy or intolerance because he would have diarrhea, not constipation. Well, I didn't follow his advice to do nothing, and I removed most dairy from my son's diet. (I say most because we would slip up quite a bit by giving food that might have some cheese or milk in it). But we did take out a lot of the dairy. We switched him to almond milk. Almost immediately the constipation was gone! My son started taking himself to the bathroom instead of hiding and his accidents greatly decreased (from almost daily to about once every other week).

We thought we had it figured out. Well, my son didn't care for the almond milk much (even when adding chocolate syrup to disguise the taste), and slowly steered more towards juices and water. After 3 months of decreasing his dairy, my son started throwing up in the morning. It was strange, he had no fever. His doctor said it was a GI bug that was going around and that it would last about 2 weeks. I didn't really buy it, but a friend at my son's daycare said her daughter was doing the same thing so I guessed he must be right. After 2 weeks of vomiting in the early mornings (usually around 4 am) yet no fever and feeling fine all day, my son got a fever and diarrhea. Again we went to the Dr. who said he must have picked up a new virus because his immune system was down. This was getting old. We were on to 3 weeks of strange GI issues! Interestingly, while the fever was there, the vomiting stopped for a couple of days.

Then the fever was gone and the vomitting was back--early morning, no other signs of sickness. Each day, my son seemed to be getting more and more pale and losing energy. The only change that I could think of in my son's diet was removing dairy. I thought that there must be some connection. We had been on this for 21 days. I went to the Dr. and told him I wanted an allergy test done immediately. We did a blood test and after a few more days, the nurse called and told me my son was not allergic to dairy. That was strange to me, because taking away dairy had 'fixed' the constipation issues. Well, I was ready to try anything, so I immediately gave him a glass of milk and pushed dairy on him for the rest of the day. He loved it. He missed having milk and ice cream, etc.

It was amazing, the vomiting stopped...but the constipation was back. We just had our appointment with our Dr. and he went over the full allergy test results with us. Apparently, my son is allergic to wheat. The Dr. wanted more blood to do a full Celiac panel. We are still waiting for the results from the panel, but in the meantime, I thought I might start focusing on a gluten-free diet.

I have never been one to read labels, and unfortunately, I am not much of a cook. I can cook, I just work all day and haven't been good about making nice homemade meals each night. :(

So, here we are. Brand new to the gluten-free idea, and no idea where to start. I do have 3 older children (ages 15, 13, and 10) who have informed me that they do not want to change their diets because of their brother. Any ideas of where to start? I have no clue what even contains gluten, or not! From reading different posts, I see that things I would have never dreamed of may have gluten in them.

Is there a Dummies Guide to Eating Gluten-Free?!

Sorry for the long post, but if you are still reading this, do you have any suggestions?

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So, here we are. Brand new to the gluten-free idea, and no idea where to start. I do have 3 older children (ages 15, 13, and 10) who have informed me that they do not want to change their diets because of their brother. Any ideas of where to start? I have no clue what even contains gluten, or not! From reading different posts, I see that things I would have never dreamed of may have gluten in them.

Is there a Dummies Guide to Eating Gluten-Free?!

Sorry for the long post, but if you are still reading this, do you have any suggestions?

First welcome to the forum! This is a great place to learn form other parents' experiences. Here is some threads to check to get you started:

Some threads with good info:

FAQ Celiac com

http://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Celiac Newbie Info 101

What's For Breakfast Today?

What Did You Have For Lunch Today?

What Are You Cooking Tonight?

I know it seems overwhelming right now, but that will pass. In time it will be come just part of your life.

We only have one child, so it is a bit easier on us, others will chime in on how to handle the multi-kid part of this. :)

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Is there a Dummies Guide to Eating Gluten-Free?!

Welcome to the forum L!

You're in luck...there is an excellent book entitled Living Gluten-Free for Dummies written by Danna Korn.

Jules Shepard also has a good one: The First Year: Celiac Disease and Living Gluten-Free

Sorry, I can't be of any help either on dealing with your other children. Mine are grown with children of their own. But there are a lot of parents on this site, who'll probably be able to give you some good ideas as to how they've handled it.

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You're in luck...there is an excellent book entitled Living Gluten-Free for Dummies written by Danna Korn.

I just found this one and have been reading it all morning! Very informative and helps me realize that others in our family should also be tested! My mother has ulcerative colitis, my oldest two daughters both have ADHD and ADD. Also my oldest has epilepsy which spiked when she was five and has kind of fizzled out. She is also on the autistic spectrum. I didn't realize all of these things can be caused, or at least affected by gluten!

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I just found this one and have been reading it all morning! Very informative and helps me realize that others in our family should also be tested! My mother has ulcerative colitis, my oldest two daughters both have ADHD and ADD. Also my oldest has epilepsy which spiked when she was five and has kind of fizzled out. She is also on the autistic spectrum. I didn't realize all of these things can be caused, or at least affected by gluten!

Glad you found it...it's an excellent book.

Yes, other family members should also be tested. It's amazing how many symptoms can be attributed to gluten. Check out this list. First time I saw it, it blew my mind.

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If you are still waiting for the celiac blood results, DO NOT START THE DIET yet. If the results are positive, the doctor will probably want to perform an endoscopy to determine if there is any damage (he/she may want to do this even if the tests are negative). Changing your diet before the endoscopy can compromise the results. Take this "waiting" time to learn as much as possible about the diet, try some new foods (find acceptable "replacement" foods) etc.

After testing is done, then start the diet. Hopefully you won't have to wait long since you have already been told he has a wheat allergy.

Yes, everyone in the family should also be tested.

Cara

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I know it seems so overwhelming at first! This board has been incredibly helpful to me. I have a 4 year old too and I know how picky they can be! Couple of things that he likes: Udi's bread (sometimes I do a "grilled cheese" using Better than Cream Cheese in the middle - it's dairy free), chocolate chip cookies with the recipe from Elana's Pantry website, the banana bread from Spunky Coconut cookbook, Envirokids Cereals, Van's Waffles, Applegate Farms hotdogs, and Ian's alphabet fries. I believe Applegate Farms also has some gluten free chicken nuggets. We also do a recipe with Namaste muffin mix where I sneak in some pureed veggies and mashed beans for protein. There are probably a lot of things that you make for him already that are either naturally gluten free or can be easily made gluten free by some simple substitutions (like using gluten free bread crumbs for regular).

If you have some time, and it sounds like you do if you decide to wait for the test results, then you can play with some recipes and products. Then if you have to make the switch you won't be starting from scratch. Because my son is on the gluten free diet because of autism and not celiac, we had the luxury of taking our time and experimenting.

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      I went gluten free & never looked back! I have dh, the celiac rash. That makes it pretty darn easy to go gluten-free the moment you figure it out. I was not about to continue eating gluten for even one more day just so the medical establishment would be satisfied in my dx. There was not a moment of doubt in my mind that I had dh & therefore celiac. As it turns out, weirder than weirder than weird and the odds I can't even begin to imagine.... I have since, by sheer accident, had 2 docs officially dx me. Is that crazy or what??!! I did not go in asking for a dx nor even hoping for one. Frankly, I just plain didn't care what they thought. The medical community has failed me numerous times throughout my life so I don't have the highest regard for them. You are 54, I was 54 when I figured mine out. I have no kids so did not need to consider them in my decision not to go for an official dx. My parents had already passed away so that was not an issue. My brother had passed away so that was not an issue either. I did contact my nephew & tell him to let my sister know so she could get tested. So I have done my duty by her & she's an adult and a nurse & can make her own decisions. I do urge people to go for an official dx whenever possible, especially when they have kids or other 1st degree family members. If it's doable for them I think they should make a good effort at it. Also, there are certain people who express they don't think they can stick to the diet without the official dx. I think those people should pursue a dx with all their might. I have never had the slightest problem sticking religiously to gluten free eating. I have never doubted myself. I know you have tired HARD! Super, super HARD. I commend you for your dogged pursuit. I would not, could not blame you for giving it all up & just going gluten free this instant. That is a choice only you can make but I fully support whatever decision you make.
    • Gluten does WHAT to the brain?
      Your brother sounds like mine, Squirmy.  He was a Type 1 diabetic and had flaming celiac symptoms to boot but his docs always, always blamed his diabetes on everything.  He lived in the country and the docs in his state just were so far from being Celiac savvy.  I doubt they ever diagnosed one. His health was failing so badly that in the end, with the 3 MONTHS of non-stop diarrhea going on, he became so dehydrated that he had a heart attack and died last August 4th. His biggest mistake was trusting these idiots completely.  I think his brain was so messed up and confused that he just couldn't understand what I was trying to tell him.......that good ole brain fog.  He did what celiac's may do when left untreated for years and years.....they slowly fail and then die.  It still is extremely painful for me to think about because I was close to him.  I still see many people in my life that I think have it because of their extreme symptoms. Listening to them complain that the doctors aren't helping them. Try suing them for malpractice too......it would be too hard to prove. And then we have those who know there is something very wrong but won't give up wheat bread because that is unfathomable to them.  This disease can drive anyone crazy, for many different reasons. 
    • I'm actually scared to go to the doctor and could use some advice
      Good for you, Elle!  Now you can figure out the problems and feel better.  We are all interested with how things go for you so please do update us when you can. 
    • I'm actually scared to go to the doctor and could use some advice
      Update: GP wrote back and said she can do a Celiac test without sending me to a gastro, so I'll make an appointment with her. And thanks to you guys, I will print out and take the description of a full panel so I can try to avoid these partial tests I've read about other folks getting. I will update, because I know when I read threads like this I always wonder how it all turned out! :-) Thanks again! P.S. I know she can't do the biopsy, but at least she can do phase I.
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