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researchmommaMember Since 05 Dec 2011
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Posted by researchmomma on 23 February 2012 - 01:01 PM
Posted by researchmomma on 14 February 2012 - 06:32 PM
all great info above!
from my understanding, and what ive learned on here-> DQ2s and DQ8s are the stereotypical Celiac genes (predisposing u, tho u dont have to get it)... but that ALL the DQ genes also make it possible to trigger Celiac. people overseas have been dx with Celiac withOUT having either the 2 or the 8. and that having 2 of the same DQ genes tends to make u more vulnerable to triggering Celiac
People in the US also have been diagnosed without genes. In a study at UC Irvine they have 800 biopsy confirmed Celiacs and 5% do not have the genes. I emailed back and forth with the sub-investigator on the study and she confirmed this.
Posted by researchmomma on 13 February 2012 - 01:08 PM
I don't think you typically see the profound malabsorption that leads to wasting in NCGI though.
This is probably true, yet my daughter is NCGI (although they refused biopsy due to negative blood work and no genes) and she is off the growth charts (less than zero percentile). They don't think she has ulcerative colitis or Crohn's. I think it is the gluten but we will see. Her hair is starting to grow in and her skin tone went from gray to pink in 6 weeks.
Because of Dr. Fasano's work, I think NCGI will bust wide open within the next few years. I just hope it isn't the "disease du jour", like IBS was. It would be nice to have definitive testing for it. Probably a pipe dream.
To the OP, good luck on your journey to better health.
Posted by researchmomma on 12 February 2012 - 09:38 AM
She has Medicade, she did see a GI specialist when she was young and he was the one who wanted to wait. At the time it made sense, but looking back now im kicking myself. I have considered getting tested also. I have had several scopes done due to stomach pain and they just said its gastritis. I had my galbladder removed but i still have very freguent "attacks". Not able to eat very much without blowing up like a baloon and im have bouts of diarrhea and constipation. Very confusing. She was tested several times for diabetes, but ger A1C levels were always boarderline. We still have ro check her sugars 2times daily. I just want to get it figured out. I guess i need to find a doctor for the both of us who will listen! :-(
It is so frustrating that a stereotype of "what is Celiac looks like" exists.
You are going to have to really push to get tested but if I were you, I would bring in a list of symptoms from this site or another where they list constipation as being a symptom. I would then plead with your doc and say, please just test us. If her blood work was positive as a baby, it will probably be positive again. Then get her biopsied. With kids, this is the best route because schools will provide her gluten free meals IF she is diagnosed. That is why for kids, if you can get a diagnosis it is much better.
Here is a link to the Wm K Warren Celiac Center in San Diego. They give a list of symptoms in kids: Celiac Center
But if you can't get them to listen.....
You may need to bag the entire thing as far as diagnosis and go gluten free. A diagnosis is not worth poor health. That is what I did. After 6 weeks gluten free my daughter is coming along nicely after years of illness. At her follow up last week, the GI was really pleased that she was feeling better and diagnosed her Non-Celiac Gluten Sensitive. I never gave her the Prilosec she prescribed and she doesn't need it. I guess what I am trying to say is that if you hit a stone wall in regard to a diagnosis and your daughter miraculously does better gluten free, the docs may say "wow, she can't eat gluten". Her blood sugars may stabilize as well (I would lay money on it).
Posted by researchmomma on 11 February 2012 - 07:58 AM
Many children do not get positive blood work even if they have full blown Celiac. Much like my 18 month old neighbor. When they did an upper GI to look for structural issues or ulcer, they biopsied him because it is hospital policy. He had Celiac and negative blood work. He was in crisis and almost died.
If your daughter tested positive, then she should have been sent to a pediatric GI. It was bad practice to tell you to wait a few years and see what happens.
My daughter had constipation since she was born. She also had reflux. Fast forward a few years and seizures started. She asthma and eczema and a host of other issues. I WISH I had her go gluten free back then. How much would I have avoided?
My advice is that you need a new doctor. If you can't find one and you can swing 200 dollars, you can order the Celiac Panel yourself through www.ineedlabs.com But I highly recommend you find a pediatric GI that will test her.
Diabetes and Celiac go hand in hand. You don't want her to develop other autoimmune disorders. You have a right to ask for tests from your doctor. That is what he/she is there for. You can also bring some articles that prove that constipation is a symptom of Celiac.
That positive blood work is really bugging me because she should have been scoped then.
She sounds Celiac to me. BTW, when my daughter went gluten-free her acid reflux issues went away after two weeks and her constipation is much better after 6 weeks. She had as soft normal colored BM yesterday and we did a happy dance. Her doctor had prescribed an adult dose of prilosec that we never gave her. Poof, her acid reflux is gone!
Hope this helps! I am running off to a basketball game for my son!
Have a good day and ask any questions that come to mind. I hope she feels better soon. When she does, you will! I did!
Posted by researchmomma on 09 February 2012 - 09:27 AM
Posted by researchmomma on 04 February 2012 - 09:58 PM
My favourite one:
After me convincing my old doctor to spring me out of hospital as long as he took full responsibility for my care the conversion goes like this:
Doc: When they sent me the note they said you needed to get a psych test to see if you have an eating disorder.
Me: What the hell?
Doc: Apparently you refused to eat a lot of the food while you were there.
Me: Yeah cause I was throwing up and had D constantly, I would just throw up more food, what is the point? Plus she wants me to eat toast, and that's what started this thing when I first got admitted to the hospital. I told the nurse it makes me sick and she threatened me saying if I didn't eat, they'd make me do a psych test.
Doc: Toast makes you sick? Why don't you eat wheatbix or crumpets instead?
Me: Because they make me sick too?
Doc: Well I don't know what's wrong with you but in the meantime I'm going to run some autoimmune tests because one of your tests came back with the Ttg through the roof. In the meantime, take these steroids so you system will stop attacking itself and you have to get a psych test.
Me: Okay, so what do I eat in the meantime?
Doc: Pasta, cake, cookies, muffins, whatever will keep the weight on.
Me: That couldn't be causing the problems could it? When I was a kid I never ate anything like that stuff and I never had these problems.
Doc: Don't be silly, food can't make you sick. You probably just have an eating disorder and need an excuse to throw it up.
Me: I think I would know if I had one, I work with ED patients all the time at work. Besides how am I supposed to fake the Ttg or whatever it is?
Doc: You're probably in denial, just do the psych test.
My family is in bed and I am up reading stuff on the computer WITH a glass of red wine because it is Saturday night. So, I just have to say that this is another Abbot and Costello conversation. Just insanity. A book could be written about the absolute absurdity of it all.
Posted by researchmomma on 04 February 2012 - 09:53 PM
"Oh honey, you don't want Celiac Disease. You can't have bread!" Oh, well then I guess I don't have it. Never mind this biopsy report....Duh.
This made me laugh out loud.
Posted by researchmomma on 04 February 2012 - 01:14 PM
Posted by researchmomma on 31 January 2012 - 12:48 PM
I had to just put the food down and stop nagging. It seems to work. However, I know how stressful it is and there is some great advice on this thread.
Google ideas for food for toddlers or 4 year olds. I bet a bunch of it is gluten free naturally.
I hope it gets better soon.
Posted by researchmomma on 25 January 2012 - 08:45 AM
Also, with gluten pasta, I could cook some up on Sunday and stick it in a ziploc and use it during the week for kid's lunches. Is that possible with gluten-free noodles or do they not last long after cooked? I could just try it but it is expensive to waste good food, ya know?
We are going to a family gathering and they are cooking baked ziti and chicken tetrazini. I am making a gluten-free pasta for the 2 gluten intolerants, so I would love to bring up already cooked spaghetti noodles and toss them in with veggies and chicken (daughters fav). Can I make them ahead or do I need to cook them onsite?
Thanks in advance.
Posted by researchmomma on 19 January 2012 - 09:08 PM
How many of you out there are “self diagnosed” Celiac’s or going gluten-free because you couldn’t get a positive results? I’m just curious as I’m waiting for the results of my blood work that was done this morning (and so far nothing has ever come back in MY favor). I’ve decided that even if the blood work comes back fine I will probably do a 3 month gluten-free test. This is the first thing in the years of sickness that actually makes sense.
Also, everyone woman on my mom’s side of the family has underactive thyroid, which I was also tested for today. I’ve been reading that sometimes there are correlations between thyroid problems, and Celiac. My mom has been on synthroid for years in the past few weeks of researching Celiac, I think she could have it too.
My daughter has a long list of symptoms including occipital seizures. She tested negative. However, I was encouraged by what I read about gluten symptoms and a few forum members here suggested that we try the gluten free diet. We have seen amazing changes. We are still in the early stages of eating gluten free but even my skeptic husband is in shock over the positive changes in my daughter. Her anxiety seems lessened as does her cranky attitude. In addition, she is eating again. Before she went gluten-free, she would eat two bites and say her stomach hurt. She is short in stature. We are hoping for some growth in the next few months.
My family also has some pretty amazing history like pernicious anemia, duodenal cancer, Grave's disease (thyroid disorder), osteoporosis and parathyroid tumors. Doctors and tests can be wrong. Or they can be right.... perhaps my daughter doesn't have Celiac but maybe gluten intolerance. We know it is real while they still debate its existence. When will they get it?
So, if your tests are negative, give gluten the boot for 3 months and try it out. It has been a pretty amazing road for us so far!
Posted by researchmomma on 16 January 2012 - 07:41 AM
What country are you in? If you are in Europe (I lived there for 2 years) you need to go to the Pharmacy. That is where they keep their gluten-free foods. I would also try www.glutenfreeonashoestring.com
My daughter is a picky eater but loves her breads and other recipes.
I agree with another poster who said to relax. You should put good foods in front of him and then busy yourself in the kitchen while he eats. Like it is no big deal and you expect him to eat the food. If you are stressed out and he senses that he has power by not eating, he will not eat. Or he may not feel like eating from being so sick. If you need to stick to fruits, veggies and meats for a few days, that will be a start. French fries are fine and actually not a bad food for him right now. You can make your own chicken nuggets by blending some flours if you think he would like that. There are loads of things you can do. Make sure he drinks plenty of liquids but AFTER the meal. I know you are desperate but search the forum and hang in there. It will be ok and since he isn't eating gluten, things will improve.
It is a terrible feeling to not be able to nourish your child but you are not a bad mother.
Posted by researchmomma on 03 January 2012 - 09:37 AM
Posted by researchmomma on 30 December 2011 - 10:02 AM
Or my (former) GI's NP who wrote "aneroxic" on my report in 2009 as I withered away?
I was a robust 215 all those years I went to that office (1998-2008) and was told I had "GERD" and "IBS" and when I lost 90 lbs, my hair, muscle mass and I was in agonizing pain, she told me to take anti-depressants, acid reflux medicine and that it could not possibly be celiac because I was overweight. She snapped "you can eat gluten!" Your blood work was Negative. That my pain was "fibromyalgia" and I should take drugs--those antidepressants are "good drugs" for that, she said.
The GI doc she works under scoped me back in '09, but failed to biopsy for some reason I still do not know--and I became more and more ill for nearly 2 more years. Until I figured it out.
I threw the scripts in the wastebasket and never looked back.
My new GI has not said it, but he implies this is malpractice. Ya think??!!
Yes, I wrote her --and that doctor---an irate letter after my DX--but as I suspected, I did not hear from them.
See why people like Gemini, Ravenwoodglass and I do not trust the AMA anymore??? We would have died (or be in a mental health ward) if we had not persevered. Instead, we have chronic pain and other AI diseases as a result of remaining undiagnosed.
Just plain wrong.
This is horrible and the path that my daughter was clearly on. Sad that you had to Dx yourself. That is what the endocrinilogist accused me of on Tuesday. She accused me of standing in the way of my daughter's health. Are you freakin' kidding me? I am her ONLY advocate. Not my husband, not her pediatrician, not the ER docs, no one but me. I am the only one looking at the whole child/medical history. WTF?
I keep thinking if I found a doctor that would listen to me, I could find someone that would accept GFD for a 6 month trial and let's see how she is doing then. But no, I am inhibiting her growth by denying her prilosec. An Adult dose of prilosec for 12 months. She weighs 70 lbs and we are going to give her an adult dose of prilosec for 12 months, really??? Add in Prozac too. GREAT.
I just want to scream....
My guess is that I will have her off the seizure meds in 6 months (the neuro can't figure out why she has seizures and but has an normal EEG between seizures and her seizures only happen yearly, probably when the gluten load is too much).
But what do I know? I am just layperson who runs clinical trials around the globe and my neurophysiology degree means nothing as well. The internet just pisses these docs off because we come in with a potential diagnosis and if we are right we negate their reason for being.
Rant over. Thanks for listening.