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Member Since 25 Sep 2007
Offline Last Active Jul 17 2013 07:16 AM

Topics I've Started

Daughter Needs College Roommate In Fl Fall 09

26 October 2008 - 12:56 PM

Hi all,

I don't really know where to put this, so I hope it is okay that I am crossposting it.

This may be a weird message, but my celiac daughter will be heading off to college next fall. She is already accepted at USF (Tampa) and UCF (Orlando). UCF has told her that they can give her a single room with a kitchen, while USF says they do not have that available. The best they have is a double (as of right now, I don't know if they will be able to work something out.)

She would have to get her own apartment for USF (very, very pricey and not convenient to be off campus) and the single room at UCF is a year lease (also very pricey.) She would prefer to have a roommate on campus at either school, but USF is her first choice school.

Does anyone have a daughter planning to go to one of these universities next fall? We figure it never hurts to ask!

My dd is a very sensitive celiac and cannot risk cross contamination issues at all.


Our Gi Experience

03 December 2007 - 08:51 PM

I know this isn't a religious board, but I have to start this post by saying that God answers prayers! I was really praying for the right GI and it seems we found him!

My 16 yo dd went to see him for an initial consult last Monday. The first good thing - he schedules an hour for an initial appointment, so he really has time to talk to the patient. I took in the Enterolab results and the first thing he said when he came in the room is that he never has patients come to him already diagnosed with a gluten sensitivity (which means he accepted the Enterolab results without question - he had also actually looked at the paperwork before he came in the room!) It was a great appointment. Everything he said was up-to-date and stuff that I had read here or elsewhere online. He explained that only 1-2% of Celiacs actually show villous atrophy when biopsied, so even though that used to be considered the "gold standard" for diagnosis, it shouldn't be.

He gave lots of advice on what it means to live gluten free (all of which I had already learned, but most doctors don't give that much detailed advice.) He talked about all the myths surrounding Celiac disease. It was just so obvious that he stays on top of all the latest research and information!

He did want to do bloodwork, but he said he expects that it may come back negative. He said if it does, that is good because it means my dd is doing a good job of eating gluten free. Because she felt that she had been CCed a few days earlier, he recommended that she get the bloodwork done the next morning because it may show up in the blood. He also recommended one lab over another on my insurance because "they do a better job of getting it right." He is testing for more than just the Celiac panel. He is also doing a full liver panel, checking pancreas function, sed rate, etc, plus he is looking for some possible deficiencies (B12, folic acid, etc.)

He did recommend an endoscopy and we are having him do it because he thinks her "reflux" symptoms may not be just reflux. He said there is a condition called "eosinophilic esophagitis" that used to be considered rare, but doesn't seem to be so rare after all. He told us about a doctor in a neighboring city who has done a bunch of research on it and has discovered it is much more prevalent than most doctors believe. Our doctor has started to test some of his reflux patients and has had 4 of them come up with this diagnosis in the last six months (and this is supposed to be a rare condition!) - two of those four were also diagnosed with Celiac!

Anyway, he said treatment for EE (which is an inflammation of the esophagus due to food allergy/intolerance) is treated differently than reflux so that is one reason for the endoscopy - to biopsy the esophagus. He also wants to biopsy her intestines and see what damage she may be dealing with. We were not going to allow an endoscopy just for a doc to feel that he could then tell her to go gluten free. (Duh!) But with the EE issue (which really seems to fit my dd's symptoms), it does seem reasonable.

The beautiful thing is that he does NOT want her to go back on gluten and actually encouraged us a few times in the conversation to get involved with the local Celiac support group. He said that he attends their meetings when he is able to and that he learns tons from them. Wow! It was also funny because he was saying how great it was that our pediatrician was so knowledgable about these issues (he assumed that the labs had been ordered by the pediatrician.) I had to tell him that we ordered the labs ourselves and he was impressed that we had figured it out.

He also suggested that I talk to my 2 yo's GI about his reflux issues (my 2 yo is on 45 mg of Prevacid per day and still struggles with reflux symptoms, particularly when glutened) and ask if he has considered EE. I know that GI has considered it because he mentioned that if the Prevacid didn't resolve my ds's reflux, then he may have esophagitis due to food allergy. This was back in early September before we figured out the gluten link, went gluten free, and then tested through Enterolab (all four kids are gluten intolerant, three are casein intolerant.) I will definitely explain everything to my 2 yo's GI at our next appt. with him.

My other two kids (12 yo and 4 yo) also exhibit signs of EE in relation to gluten (and possibly casein in my 4 yo), so I will talk further with the doctor about where to go with my other kids after we get through everything with my oldest.

My dd also got biopsied today at the dermatologist for suspected DH, so we will see what will come of that.

I am so grateful that we found this doctor! I just want to encourage you all that good doctors who stay on top of the latest information and respect their patients really do exist! I wasn't sure it would be worth it to pursue help from a doctor because the cure is gluten free and we can do that on our own, right? But in my dd's case, she may have this other related condition which may require further investigation into food allergies if the gluten and casein are not the only culprits. He is also looking to see if she is facing any damage or deficiencies so we have a little guidance there. I have been wondering how I could determine what type of supplements my dd may need to help her reach optimum health as soon as possible.

Sorry for the long post!


We Are Having A Lot Of Cc Issues

23 November 2007 - 10:37 AM

Our latest cross contamination seems to be Pacific Almond milk. It is the only thing that seems to be common to all of us and the newest symptoms we are having. Sigh.

The cross contamination issue is the hardest one for us. Will we always be this sensitive???

My question is - Is there a list somewhere of safe products that are made in dedicated facilities or on dedicated lines? I found a contamination list, but it is small.

I so wish I could avoid all processed foods, but almost everything is processed to some degree. Even when you cook from scratch, you rely on processed food (vinegars, flours, vanilla, spices, etc.)


Have Any Of You Had Problems With Nature's Path Products? (lifestream, Envirokidz)

21 November 2007 - 08:38 AM

We have cut out almost all processed foods, but do have a few that remain simply for the ease of feeding four kids and two of them being quite young. Our processed foods consist of Lifestream Mesa Sunrise gluten free waffles, Envirokidz gluten free cereals (Panda Puffs, Gorilla Munch, and Koala Krisps), and Envirokidz gluten free peanut butter Crisp Rice Bars. Other processed foods are on occasion, but these the kids eat rather regularly (waffles once per day and cereal or a rice bar as a snack at some point during the day - not all of them everyday.) All other processed foods are on a more "occasional" basis.

We had a glutening on Saturday, November 10th. We assume it was the Kettle chips that read clean. We no longer eat them. All four kids either ate them or handled them while eating. The dd who only handled them is pretty much better now. The dd who ate them is taking longer to recover, but is doing better. The youngest ds is doing better in some respects, but his sensory issues are still flared up. My 4 yo ds is only mildly better. Now he is the one who most seems to suffer from what seems to be the "peptide withdrawal" effect, so his emotions and behavior go totally crazy (along with skin, bowel, and other physical issues.)

So I am wondering if the boys are just still withdrawing from the glutening on the 10th or if they got glutened again! If they did, it would have to be from a cross contamination. As far as I know, we have taken care of everything else (cookware, toaster, cutting boards, can opener, shampoo, soap, etc.) So, it would have to be from "gluten free" products or products that read clean.

The boys (and one dd) are also casein free, so it wouldn't be dairy. We don't do "soy" per say, but we do allow it in things like a meal that contains gluten free tamari sauce. We don't do it as soy yogurt, soy milk, etc.

What have your experiences been? Have you ever been CCed by Lifestream or Envirokidz? They give a long explanation about their meticulous cleaning and testing processes, but that does mean they do not process in a dedicated plant and I also read that to mean they don't even have dedicated lines (if someone knows otherwise, please let me know.)

Or do you think the recovery from the 10th is taking this long?


Frustrated - What Can I Expect From Here? (very Long, Sorry)

07 November 2007 - 07:25 AM

My dd will be 16 yo in less than 2 weeks. Her symptoms have been varied and led her to trying a gluten free diet. She had some immediate relief which convinced her that she doesn't ever want to consume gluten again. Some of her symptoms have drastically improved, some have mildly improved, some have not changed, and some have gotten worse. Here is her list:

Amenorreah - she got one period 2 years ago and never had one after although she has no "reason" not to have been getting it. She is not overly active, she is not underweight, etc. The docs basically tested thyroid and did a wait and see up until this month. A gyn then checked her hormone levels and did an MRI on her pituitary (because she has a misshapen optic nerve). Everything came back normal. The doc also gave her a round of 10 days of Provera (progesterone) to get her to ovulate and start her period. She did start - before she even finished the progesterone, which makes me question whether or not she even needed the progesterone or if she would have started on her own now that she is gluten free. Do any of you have experience in this area (missed or absent periods due to gluten sensitivity)?

Brain fog, fatigue, depression, irritability, headaches, leg pain, joint pain, constipation, diarreah, skin rash (possibly DH) and mouth sores - these all have greatly improved. When she got CCed, these got much worse, but are improving again.

Excessive appetite, numbness in feet, excessive daytime sweating, night sweats, and insomnia - these have pretty much completely disappeared.

Weight gain - despite increased activity and decreased caloric intake (she started tracking it over the summer because it was obvious that she was gaining weight when she shouldn't be), she has gained weight. She cut her calories in half and started running two miles per day, plus played competitive volleyball and still gained weight. Since going gluten free on Sept 25, she has not been running as much (she was sick through detox and then got glutened and sick again and now has new symptoms). She gained a couple lbs, but has been steady now, but still should be losing weight with her caloric intake.

Reflux - we never realized that she had reflux symptoms before going gluten free because she never complained about them. They were mild and she thought they were normal. When she got CCed, reflux hit her hard - severe chest pain, severe back pain, sore throat, stuffy nose, nausea, and coughing. We wouldn't have even recognized it as reflux if both my 2 yo and dh had not been diagnosed with reflux in the last 6 months. We did take her to her pediatrician to rule out anything else (lungs, heart, etc.) The reflux is so bad that she can't run now because everything backs up and she starts coughing and choking on it and can't breathe.

I am tired of doctors and am tired of no one really looking at the "whole picture" of her health. She has been to her ped about this stuff and he ran standard bloodwork and thyroid tests and then said she was probably just depressed. Well, yes, she was depressed, but it was due to her health. She got checked again 6 mths later - same tests, plus an abdominal ultrasound - with no answers and 6 mths later - checked again with no answers. So, we went to a gyn and she ran the tests for hormone levels and ordered the MRI. Everything came back fine, so my dd doesn't see her again for another 6 mths. The doc mentioned PCOS as a possibility but said it was expensive to run all the tests to check for that and it is kind of early to explore it.

Back to the ped. about the reflux symptoms. I gave him the Enterolab results, but he has never heard of Enterolab. He didn't dismiss the results, but wasn't much help either. He ruled out other causes for her chest/back pain and coughing, but didn't suggest we follow up with any treatment either.

Then to the dermatologist about her skin rash. It is looking much better since she went gluten free. Because it currently is on her back (straight down her spine), the doc said it could be DH or it could be acne. She doesn't currently have any of the clear blisters. She scratches them open and then the spots get infected. So the doc wants her to start 30 days of antibiotic and a topical treatment to clear up any acne she has and see how she looks in a month. She is being conservative and didn't want to jump into a biopsy. I am glad for that, but I question the antibiotic with as messed up as her GI system seems to be right now, especially because yesterday her nausea got much worse and she vomited. She was severely nauseated all day and still is today. The nasal stuffiness is worse, so she doesn't know if the nausea is from drainage or stomach acid. Sigh. I will call the dermatologist today and tell her that I don't want to start the antibiotic until her stomach settles and maybe not until she sees the GI. Which leads me to the next doctor...

I made an appt with a GI after the reflux symptoms started. I wasn't going to bother with a GI for just the gluten stuff, because she knows she is sensitive and doesn't want to have to go back on gluten just so a doctor can say she is sensitive. I will take the Enterolab results, but don't necessarily expect him to give them much credence from what I have read here. I am going to try to get her in sooner now that she is vomiting.

SOOOO - if you have managed to read all this - can I expect that she will start to see resolution soon? Did any of you have these type of symptoms clear on their own by just going gluten free? I am happy with the progress she has made. I am also happy that nothing "really bad" is showing up on the tests that they have run. That gives me hope that maybe none of this is irreversible and that she will not need major treatment to try to get her body in proper running order.

Oh, and she tested positive for Antigliadin IgA, Antitissue Transglutaminase IgA, anti-casein IgA, with mild absorption problems. She has one celiac gene and one gluten sensitivity gene. This is from Enterolab.

I have three other dc with their own issues. They have all tested gluten intolerant and two of them are also casein intolerant. They have their own doctor appts. and therapies, etc., so as I said, I am getting a little sick of the traditional medical thing. I won't discuss them in this thread though. My life has been consumed with changing our house over to Gluten-free Casein-free, plus we are chemically free (food has been quite a challenge for the last couple months!) We have replaced everything nonfood, got new cookware, etc. I have spent hours on the internet doing research. While I am finding answers and am so grateful, I am also exhausted by it all.

I just wish I could find ONE doctor who would look at all of this and see the whole picture! Thanks for letting me vent and any advice or encouragement you can provide would be great!


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