jessicamcc
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Posts posted by jessicamcc
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So cute!!!! Glad you included a picture! Have fun with your new family members!!!! :party:
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FWIW, my mom has a friend who was diagnosed with celiac way back in the '50's. So it's not a new condition, even if its prevalence wasn't as widely recognized until the past decade or so.
You're right. I'm sure he knows about it and would obviously believe in the medical facts. Maybe the skepticism I'm sensing is more directed at me. I think I might be "one of those moms" in his mind. To be fair to him, I realize that we have only recently met and started dealing with him. He is probably puzzled by my insistence. But, my pediatrician has known us 13 years and knows I am not that way with every little thing. Ironically and thankfully my oldest has had no health issues and problems. There is a 7 1/2 year age gap between my two boys. For the first 7 1/2 years in that office, we mostly had routine visits. I would be like "everything is great, no questions here, see ya next year, unless he gets an ear infection or something." L's path has been VERY different.
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And, to be honest, I'm not sure how much his GI believes in celiac. He seems kind of old school.
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Supertechmom- You've had quite a journey! I agree with results; you can't argue with them! It is such a day and night difference in L being off gluten. I will contact someone to get more help. Your above links are so helpful. One mentioned on there that you HAVE to have gluten for awhile before the test. That would have been helpful to know!!!!! I just want to make sure if he is gluten sensitive or if he is celiac. Autoimmune diseases run in my family and I want to know what we are dealing with for him
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Constipation can most certainly be a symptom of celiac. Only roughly 10% have the typical diarrhea type of celiac
Here are some links from various sources to back that up. You really have to go to ped celiac specialsit or run the chance of a ped GI who has little knowledge.
http://www.celiac.or...&id=6&Itemid=12
http://www.celiaccen...toms-checklist/
http://www.csaceliac...iac_disease.jsp
http://www.curecelia...s2_Symptoms.pdf
Find a celiac center near you.
From a mom with two non positive celiac children. Yep that's their official label. :)
WOW! Supertechmom, you have given me a lot to think about and research! How did you find a celiac center? I'm going to print some of this and share with my doctor. Did your children's celiac show up in the endoscopy?
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I love, love, love deviled eggs! So, I chose other. Scrambled is 2nd choice for me.
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Just heard back from the GI . L is SEVERELY constipated!!! Tiramisu mentioned how that might be a possibility, even though he goes twice a day. I'm just disappointed the GI isn't concerned with what is causing this. He wants him to do Miralax (6 capfuls in 32 oz. tomorrow and one cap a day from now on). I think that is great to clear him out, but I would like to prevent this from happening again. The GI is not concerned about celiac. He said the high number is better than low. When I asked for a scope, he said he couldn't because of malpractice! If he doesn't have enough blood work to confirm celiac, he can't do the scope. I put a call in to my pediatritian's office. They are going to meet with me on Tuesday to decide what the game plan should be for L. They are the ones that wanted me to have L get the scope in the first place. Apparently, they have a few patients in the office (it's a large practice) that tested negative in the bloodwork, but the scope was positive. If they feel the need to push it with the GI for a scope; they will. I have had a very good relationship with that office for 13 years. ( I did have to learn to not push aside my own worries about being polite and talk staight with them. And they are listening wonderfully!) I think the GI thinks that I'm some crazy lady hungry to get her kid tested for no reason. ;) At least my pediatritian knows I've always been really reasonable and if I'm making a stink now that there must be a reason for it!
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I am so grateful to all of you for the very helpful advice! The doctor's office is still waiting for the report from the hospital. That is why he had wanted us to go to the first hospital; he would have been able to receive the xrays asap. Not much we could do about that, since they didn't take our insurance. L's stomache is still hurting today and his skin is very broken out.
Pastel, I'm glad to know that about the gluten tests!
danielleMD- I have never looked in this direction and will do some research.
Tammy (TX)- THANK YOU for the link to that book! I already can't stop reading it!
Tiramisu- You are so very sweet- THANK YOU!
It truly means a lot to me that so many of you have taken the time to respond to my plea for help. It is nice to have others confirm that you are on the right track and to tell me to trust my instincts! I have felt for a long time that what we are feeding him could be hurting him. I've tried to make as many adjustments where I can, but honestly, how much can I do if I don't have all the answers? I've been researching as much as I can and have gotten him an appt. with an allergist that is known for exploring all options. We can't get in till March 6th (they are very popular). In the meantime I am pushing the doctors to find out as much as they can. I think I finally just snapped and that's it! I don't want him to suffer any more, especially if there is something we can do to help him! No more "let's just wait and see". Or his skin has nothing to do with anyting else. I think his poor, little body is trying to tell us something- I just need to learn how to listen! :) I think this must be a growing problem, since so many other little ones are suffering.
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Both of mine rejected typical teethers. They would chew on my pointer finger knuckle turned to the side. It sounds weird, but they would chew on it like dogs with a bone. Of course this only works before they really get their teeth in!
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They're back now- everything went smooth! Of course, now WE have the xrays and have to get them to the doctor. The boys liked looking at them (I can consider it science, right ;). We were able to pinpoint a couple of basic things. Pretty neat, but I'm sure the doctor will understand them better than us!
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Thanks, Tiramisu, for the info. I don't know any of the other numbers, but I will ask. Hubby just called. The hospital won't accept our insurance, so he had to leave with the orders. :mad: It takes 40 minutes to drive there! They were very apologetic about it. The doctor asked us to go to that one, because he would receive the results right away. I never thought to ask if they accept our insurance. Just called the hospital only 20 min. from us and they will take him. Crazy!
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Gracesteacher,
I am so sorry! Living in pain constantly like that.... my heart aches for your little one. I hope you can find some answers, maybe even from a response here.
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Timberdoodle has a great selection!
http://www.timberdoodle.com/SearchResults.asp?Search=graphic
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I'm so sorry ! That is very frustrating! Our boys are not diabetic, but my best friend's son is Type 1. It has been very hard for them financially. She lives in Maine (I realize a different state than yours) and the state paid for his expenses for one year and then they qualified for state funded health insurance. They didn't even know that this help was out there, until they started asking around. Have you looked into state funded help? Do not be embarrassed by this! My friend and her husband have always worked very hard and B's diagnosis about killed them financially. One day she was showing me how much it was costing them and I couldn't believe it! It is a VERY expensive condition, but extremely life threatening if not treated. I don't know if this was much help. I hope that others will be able to offer more. I just didn't want you to feel alone in this. :grouphug:
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Hubby just walked out the door with L to take him for the xray. It is good to rule out all possibilities. I appreciate all of the responses. They have given me much to think about. We are going to ask for an endoscopy next. Henleacademy is like a typing encyclopedia of knowledge! I wondered if he should have gluten before a test. He has been gluten free for a few weeks.The nurse did tell me that for his age group the highest he should be is 185 and he is 223. So, that is not too high. Can that test be affected by not having gluten for awhile?
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I didn't like the homemade laundry detergent long term. My hubby was complaining about stains. I've had great success with Seventh Generations powder laundry detergent.
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I really feel your pain! My ds (10) began having stomach issues when we introduced food. He had such bad diarrhea that his bottom would become so raw that it would bleed. He would have a dozen diarrhea bowel movements a day. His pediatrician wasn't too concerned but I knew something wasn't right. The ped sent us to a GI doc but he thought i was giving him too much juice. I was furious because this kid couldn't drink any juice because it caused more diarrhea. At three he started vomiting frequently at night. He actually stopped eating and I demanded that the GI doc do something. He agreed to do an upper endoscopy and a colonoscopy. His colonoscopy and biopsy were normal but he had severe inflammation in his esophagus as well as large stomach ulcers. Anither test revealed that he was also having stomach motility issues. the food was not being digested and just sitting in his stomach. He started on medication and improved. He is now 10 and just got over another bout of vomiting, weight loss, fevers, etc. The GI did another endoscope and found more ulcers. He also decided to do blood work to rule out IBD (inflammatory bowel disease). All of his blood work came back normal but now he is experiencing severe pain in his lower abdomen occasionally. I am monitoring his weight and if things get bad again I will push for further testing. People are shocked when I tell then that ds is 10 because he is so small for his age.
I would want to know why your GI doc doesn't want to do a colonoscopy and endoscopy with a biopsy. The biopsy would show Celiac or Crohn's disease. Crohn's disease many times had a skin component along with it. Why does the GI want an X-ray???
I sure hope you find some answers soon. It is so hard to watch a child suffer!!
Please keep us updated!
God Bless,
Elise in NC
I'm so sorry for your son!!!! It kills me to see mine suffer! He's actually very tough, so I know when he complains it really must be hurting him. I really appreciate your sharing your story with me. It makes me feel better that I amnot the only one that has gone down this road. The doctor did say he would send him for a scope. I am puzzled about the xray as well. My hubby is going to take him soon. I am sick and my hubby convinced me that they would not appreciate me sharing my germs! I agree, just would prefer to go.
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Katy,
I do want to research the GAPS diet. It seems like a good place to start. I had forgotten about it! Thank you!
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Do you think your DS is constipated? Sometimes it seems little kids can get constipated in spite of how good they eat and it can take awhile on Miralax or magnesium to fix that.
Is he GF right now?
I'm not sure if he is. He goes very reguarly, like twice a day. Sometimes it is loose. The GI said this could be a sign of constipation. He asked us to try Miralax. My poor baby's stomache could not handle it. And he is GF now and so much happier and feeling better.
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I don't have a lot of experience. I'm sure you'll get more help from others, someone will be able to tell you what that IGA number means.
Both of my kids are GF. I believe DD is gluten intolerant, I don't have any reason to think she is Celiac. It has made a HUGE improvement in her attitude and behavior!!! HUGE!
My guess with the x-ray is that they're looking for evidence of constipation.
FWIW - both of my kids have had much better/easier bowel movements since going GF.
:grouphug:
Thank you for your kind response! I definitely think gluten affect his behavior. Since we've taken him back off, he has been SOOO much happier! It took a few days, but what a difference! His stomache has been much happier, too! :hurray:
I just hope that they xray and results go smooth.
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Also, "organic food" has NOTHING to do with how healthy it is. NOTHING. AT ALL. Making food from scratch also doesn't automatically make it better balanced. My next door neighbor makes all her food from scratch, and it's delicious but full of heavy cream and butter and low on veg.
Celiac disease is not an allergy. It's an autoimmune condition. It cannot be caught by allergy tests. It is not a sensitivity, either. You have to do a specific test for celiac disease.
Lactose intolerance is not an allergy or a sensitivity, either. It's a lactase deficiency.
I am a sensitivity skeptic, too, but NO ONE denies the reality of celiac disease.
I do realize organic isn't enough on it's own. We eat tons of fruits and veggies. I'm a juicer and I make smoothies for my kids (fruits, veggies and plain yogurt with honey). Brown rice, not white. We have tried to eliminate most preservatives and food dyes. I make bone broth to help nourish. No soda and VERY little junk.
The point I was trying to make to the doctor was that the constipation was not caused by an improper diet.
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I wasn't sure how to title this post. I'll give my son's story and then any help or advice would be GREATLY appreciated!!!
My son is 5 1/2. He has had stomach issues since he started eating. He threw up so much that I went back to solely breastfeeding him for 3 more months. He did somewhat better, but his skin became red and rashy. Later diagnosed with keratosis pilaris ( a skin condition). I kept insisting he had problems with food. Blood test showed sensitivity to wheat, dairy, eggs, pecans, peanuts. I was told to rotate the foods. Overtime he kept getting worse. Skin was still bad, pale, low iron, horrible stomach pain, sometimes just so tired, dark circles under his eyes, not gaining much weight, but he was growing taller. I have a wonderfully sweet boy, and yet, sometimes he would become Mr. Hyde. Disturbingly so. I went back to the doctor's and said enoughs enough; he needs help. Sent him to an allergist. He was tested and diagnosed with peanut, pecan and soy allergies. Allergist didn't believe in food sensitivity tests and said to add everything else back in. She said his problems were with the allergies. Five days after adding gluten back, he was in so much pain he was not really eating. And he was a holy terror! Can't blame him; he was in so much pain, but it was more than that. He was out of control and couldn't help it. I took him off of all gluten. They sent us to a gastrointerologist. He said L was constipated. :confused1: Typical American diet and all that. We eat the opposit of the typical American diet!!! I spend way to much on organic food and try to make as much as I can from scratch! He did send him for blood work. I called the nurse today and asked for the results. She said his IGA was 223. I asked her what that meant and she didn't know. She was going to ask the doctor and call me back. She called back a few minutes later saying the doctor wants him to come in to the hospital for an xray.
Does anyone out there know what this could be leading to? I'm so confused. I feel like I have been fighting for my son. I just don't know what we are up against. I'm crying as I write this. I just want to help him. Have any of you had a similar experience? I think my parents think I'm crazy. But, I truly feel there is something wrong and it would beso awesome to get some help for him. Could he be celiac or gluten sensitive? To anyone who has taken the time to read this- thank you for listening!!!!
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This idea could be expanded to include the entire family.
This reminds me of the time I had my son analyze the water and electric bills as a small math project. He had to plot the data for a couple of years, analyze trends for increased usage, then compute a variety of averages. An unplanned consequence of this was that he became hyper aware of wasted electricity. He is still vigilant about turning off lights and power strips many years later.
Some library systems have Kill-a-watt meters that they'll loan out to help families track power usage. This would be a great project for young teens.
This is a really great idea!!!
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You can keep the juice in the fridge for up to 24 hours with minimal nutritional loss. It has to be sealed tight and preferably filled to the top. Having the least amount of air makes the difference. Look on Dr. Mercola's website and search Juice Lady. She has a lot of great tips!
Not bouncing back from illness
in The Chat Board
Posted
I think you should take her in on Monday and get checked. Just to be on the safe side. It does sound like she is run down, maybe weak from that last bad virus she had. It can be a hard cycle to break. I've been there before. Maybe some nourishing bone broth to help boost her system to heal. It is frustrating to keep getting sick like that. At least if you take her in and get tested, even if there is nothing, you can relax, knowing you tried everything. Hopefully, if it is something, they can figure it out and help her heal quickly! Keep us updated.
Hugs and hoping she starts to bounce back! :grouphug: