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CateK

Should We Wait To Go Gf?

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I took my 14 year old to the specialist yesterday for chronic constipation and bowel leakage. He has always been underweight and undersized for his age but the docs have always chalked it up to short parents (5'4" and 5'6").

My son has complained about bone pain, headaches and tireness and stomach cramps, but I chalked that up to growth pains, sinus problems, not getting enough sleep and the constipation.

I had to fight my family doctor to get a referral to the specialist but after years of laxatives, enemas, and a high fiber diet filled with wheat...

THe gastro doc - I have to look up how to spell it - when he saw how thin my son was and how tiny he was and how underdeveloped his muscles were started asking me a lot of questions.... symptoms we had never put togethere before... said he thought it might be Celiac Disease.

We went straight down for xrays (to check for bowel compactions (which was there) and a whole series of blood tests including the Celiac Disease tests, anemia, thyroid and to check for bone density... the test results should be back by the end of the week.

He told me to start reducing the gluten in his diet now and he would know soon (hopefully by the end of this week) if we would need to go completely gluten free. He said he wanted not to take him off completely as he may have to do the biopsy in about six weeks for a conclusive determination but we could start getting used to the new diet.

Sounds to me like he's pretty sure this is the problem.

I feel terrible that my son has suffered with this for so long.

Good news is that since he is only 14 the doc said he has a good chance of catching up on height and weight to something normal or near normal.

He said we would also follow up with additional allergy testing for lactose intolerance, soy allergies and others but we would worry about those later.

My son is pretty positive at this point -- at little excited even that he will get special food like his brother who is allergic to peanuts, nuts and shellfish. I don't think he understands at this point how much he really can't eat.

The hardest part is that we live in the middle of nowhere (2 hours to see the specialist) and 2 hours from a store that sells gluten free products and 2 hours from a health food store where I can buy rice flour and other products to bake him stuff... but we will adapt if need be and the internet, I think will be a help. The UPS guy already knows all my dogs by name, so getting things shipped to us will be nothing new.

I think I"m the one who needs the most encouragement and reassurance at this point because I feel so badly that I didn't push harder and insist there was something more wrong than just constipation.

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It's up to you - if you want to do the biopsy, then yes, wait on going gluten-free. If you're not sure if you're definitely going to do it, then you could give the diet a try. No one can really answer that question for you and your son. I didn't ever get a biopsy myself, but some people find that it is important for them to have that part of the diagnosis.

One good thing to note, however, is you don't have to buy special gluten-free stuff to have plenty of variety in your diet. It means more cooking, but it doesn't have to be expensive, or difficult, to find plenty of naturally gluten-free foods. (And it really is possible to live without bread! ;-) hehehehe... )

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If you do mre tests then wait.

A lot of this diet is learning. Sure, he won;t be able to eat most stuff on the shelf but he is not being cut off in any way. It just mean less processed foods. More made form home and healthier things. Fruits, veggies, meats, some candy, rice products, corn products, there is so much. Just think of how much bette rhe will feel on the diet. No more pain! Living far away is bad but lots can be ordered online like you said and stock things up and feeze them!

Good luck to your son!

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Guest taweavmo3

Don't beat yourself up! There's no way you could have known. At least you are finding some anwers now. My brother is 27, and now that my daughter is positive for Celiac, he is finally going to go get tested. He has been incredibly sick his entire life, and it's just getting worse. He looks awful, and has constant bouts of diarrhea and vomiting. I think he's just lived this way for so long, he didn't realize that feeling the way he does isn't normal. Thank goodness your son will start to feel better now, instead of ten years from now, or never.

I had two pediatricians tell me Emmie was normal, that she was just small like me (I'm barely 5 feet tall). But, I knew something wasn't right. I got lucky that we changed from an HMO to a PPO this year, so I just went to the pedi GI myself. Had I needed a referral, it definatley would have been an uphill battle.

We are new to this, and right now it is overwhelming. I have to learn how to cook all over again! And, so far it has been expensive, but thanks to this board I'm getting some great ideas that don't seem too pricey. Problem was, I had just done a 3 week grocery shop the day before we got the diagnosis. Did you know grocery stores will take food back??? LOL. I am extremely lucky though that there was a specialty grocery store built last year, just right down the street from us. They have a small gluten free section, but it seems expensive to me. I'll probably still do alot of shopping online though to get more variety and comparison shop.

Good luck to you and your family. If it were me, I would probably hold of on going totally gluten free. Just from what I've learned in the past two weeks, it has been hard to go totally gluten free right away. I'm sure there is something I'm giving Emmie that has gluten in it. I am slowly learning. You can start researching it now, get some cookbooks and ideas, get prepared. Then if the time comes to go gluten free, you'll be ready!

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Yeah if you are testing further don't go off of gluten yet. It can mess up test results. It's a good thing that they caught it at a young age of 14. There are also wonderful gluten free foods that he will love. Don't get down on yourself you didn't know. I do recommend the family get tested if he has it because it is genetic. This site will provide useful information and if you have any questions just ask and someone will most likely be able to help you out. There are lists you can print out for safe and forbidden foods of celiacs. They are a good guideline when first starting out ...it can be a bit overwhelming. Hang in there it's a good thing they found it :D

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Guest TerpyTaylor

As others have said, f your son is going to have a biopsy, wait on going gluten-free. From my understanding, the small intestine can repair itself rather quickly once the gluten is absent, so it is hard for doctors to see damage and give a full diagnosis. This happened to me; I was off gluten for several months when I had the biopsy done, and while there was some visible damage, my specialist said he couldn't make a full Celiac diagnosis unless I went back to eating wheat (since other things can cause small intestine damage as well) and redo the biopsy. But my dietary change has such drastically wonderful results that there was NO WAY I was going back on gluten- why would I do that to myself when I KNOW it's the cause of all the problems? Plus it would have caused me to miss a ton of school and I can't do that as a college student. :o My doctor completely agreed and told me not to go back on, that even though my biopsy was technically "inconclusive" by medical standards that there was no doubt in his mind about it. So what he did was write "wheat intolerance and IBS" on my charts, which is actually better because of my age and the fact that I don't have my own insurance yet; when I go to apply for that I do not have to say that I have a pre-existing condition and face the possibility of being turned down. :blink: It's weird how all of this works! Definitely count it as a blessing that your family has caught on while he is still rather young, his doctor is wondeful. I had all those same problems as him growing up, but I guess being a girl they weren't as concerned that I was underweight and such. My mother lived with the disease for 42 years before someone, after hearing how ill she was all the time, told her about celiacs. We had to go to our doctor and ask to be tested; and this was after seeing specialist after specialist for years, both me and my mom.

Good luck and God Bless,

Taylor Atkinson :D

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I hope this helps. I have been told the biopsy is the "gold standard" in making a diagnosis of celiac disease. In fact it is the only way to truly diagnose it. Taking your son off gluten before doing the biopsy can cause a false negative result. If your son is a celiac you really should know positively. I do not know your situation but I think it would be awful to go through tests after a negative biopsy result only to find out later it really was celiac disease! The tests are not painful, but not knowing and going from one doctor to the next is the pits! I urge everyone to get a biopsy done on a normal diet.

Also, there is nothing to blame yourself for regarding your son's suffering. You do not know for certain he is a celiac. Sometimes diagnosis takes quite a long time. It is nothing to beat yourself up for. It really depends on the symptoms the doctor picks up on and if he is familiar with celiac disease and puts things together. My daughter did not have any of the "regular" symptons and she was tested for so many things I can't count them. Just go with what you find out and good luck!

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