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About jcgirl

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    Converting regular recipes to gluten free. Bob's Red Mill all purpose flour and xantham gum are my buddies.My non-gluten related interest include rose gardening, Bruce Springsteen and my children's high school sports. I also enjoy entertaining and serving gluten free menu without others realizing the difference.
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    Conlin, NY

  1. I'm from Oneonta, up the Susquehanna from you. I didn't get flooded out of my house, but the town of Oneonta and surrounding area was hammered. Much of the city was under water for the better part of a week. The sewage treatment plant was underwater and nonfunctioning until September (sorry about the raw sewage dumped into the river :ph34r: ) Many of the roads are still showing some damage from the flood.

    I hope your situation turns around for you very soon.

    'Willi Wonka Chocolate River' as my 13 year old liked to call it has cleared up and behaving itself for the most part. Gave us a scare a couple times though when it creeped back up the bank. Things are finally moving along with a new crew working on the house. I will even have my very own gluten free kitchen pantry cabinet. With 4 kids it is hard to keep them out of my gluten-free snacks and especially the fruity pebbles.

  2. Hi all, I haven't been on recently because my son has been getting progressivly worse sense January. He vomits more than he doesn't. After a follow up endoscopy and another biopsy for celiac with full blood panel the answer was still negative to celiac. GI said he believes he may have cyclic vomiting syndrome with abdominal migraine. I have been doing alot of research and he just doesn't fit the bill. He is progressivly getting worse and not responding to medications. Brandon has vomited approximatly 51 days so far this year. Vomiting episodes alway accompanied by ab pain. He has had ab x-rays at ER and they said he has to poop and has alot of gas (give me a break), ab CT scan did show slight enlargment of a gland (still not sure what one), brain MRI report said normal, AB/Renal ultrasound said mild fatty deposits in liver. He has gained weight through all of this. Face is fat and mid body fat, sounds to me like it could be some form of Cushing's. His thyroid tests normal except for elevated total T3. Oh, he is also retaining fluid. We are being referred to Cleveland Clinic for metobolic testing.

    I am at my wits end. Can't seem to put this puzzle together and I feel like time is waisting away waiting for Cleveland. Has anyone else had any experience like this? Also, I have lost faith in local doctors, they seem to have tunnel vision now, especially the ER doctors. The kid was vomiting blood, pediatrician told us to go to ER, the wanna be ER doctor said it was not his area of experteas and suggusted alternative medicine and not to bring him back unless he vomits a cup of blood or more. Needless to say I told pediatrician who in turn has filed an official complaint. Our new pediatrician is the only local doctor I trust, he is looking at every possible senario. He also ran celiac blood panel again, still negative. Skin prick tests negative as well.

    So anyway the official dx's that we have thus far is major acid reflux, 4 esophigus ulcers now cleared up, pyloric ulcer cleared up, definate lactose intolorance.

    Any suggestions or insight would be a big help. Afterall, it was the internet and this site that helped me figure out that I have celiac. As a side note, through all the stress of my son's illness, I cheated, had some beer and broke out with DH. Stupid me. :unsure:

    Differential diagnosis to cyclic vomiting are many, including partial intestinal obstruction and ureter obstruction. How would one go about getting an independant analysis of films?

    Sorry for the long post and I thank you all in advance for your caring and understanding like always.


  3. Ev in Michigan,

    I had typed a rather long reply to you and one of my kids hit a button on computer and it is now lost. Sorry for that. Anyway, Here is my advise from experiance, don't let your doctor just write you off with an anti-depressant. I was stupid enough to let that happen and I did not need an anti-depressant. Same doctor told me 10 years ago that I had iflammatory bowel disease, then he disappeared for a few years, came back and now all his patients have irritable bowel disease and he prescribes Effexor. I trusted him and took it and I have to say that it was hell!!! That is when I started researchin and looking for answers on my own. Now I know that I am gluten intolorant, and most definatly celiac, the stupid doctors won't do a biopsy.

    My advise, DON'T GO FOR THE ANTI-DEPRESSANT!!!!! FIRST INSIST ON CELIAC BLOOD PANEL AND BIOPSY. You would not be here on this site if you were not seeking answers. I have found this site to be a live saver. I was diagnosed via EnterLab. Trust me, I have ingested gluten sense the results and low and behold the symptoms come back each and every time that I eat and/or drink something with gluten.

    When completly Gluten Free I feel AWSOME.

    So anyway my advise is don't do the drugs, trust your body and continue to ask questions and insist that your health care provider perform the correct tests.

    Good luck and keep us posted with your struggle to find an answer.

  4. Patty and SB4480,

    Thank you both for your replies.

    Update to my plans for the prep and proceedure;

    Doctor's office called today and the C-Diff and Giardia was negative. Good news in some fashion, but still no answer to the puke fest (as my son calls it) and the never ending D. I believe deep down that he does in fact have at the very least gluten intolorance like his mom. I pray every night that is not the case. Kinda hoping that he is cheating on the dairy free diet. But, I really don't believe that is what is happening.

    Anyway, the prep that he has to do is after lunch on Saturday (proceedure is Mon.) he goes on liquid diet. Also has to take 1 ducolax on Saturday evening. Sunday is strict clear liquid diet and suppose to start drinking 10oz bottle of Magnesium something or the other at 2pm and begin visiting the BR.

    Spoke to nurse prac. and she said that starting the magnesium at 4pm would be ok so that my son can still go on his first trip with the ski club. He has missed out on alot lately. My husband and I plan to send him off on the ski bus in morning and pick him up in the motor home on the mountain at 3:30. I knew there was a reason for letting my hubby get that darn motor home :P . Personally I like hotel vacations more than that darn motor home :rolleyes: . Anyway, Brandon will start the prep once we hit the road. It is a 3 hour drive to the children's hospital where his GI doctor is. When we get there he can drink or shall I say choke down the second bottle and spend the rest of the evening in the hotel potty room with his portable DVD player. On a good note, Mom and Dad won't miss the girls on Wisteria Lane :P love that show. Looking for a bright side to all this, can you tell.

    Now for the eating issue. Brandon has requested a 1 inch thick T-Bone Steak from the local butcher as his last supper before the prep begins (kid after my own heart). So he gets that meal on Saturday for lunch, yum B) .

    Here is my problem, what the heck can I feed him so that he doesn't feel starved on Sunday??? He will be skiing and probably rather hungry at first. The kid doesn't like chicken broth. Jello would work but would he feel full. I do understand and know that once the prep kicks in he more than likely won't even want to eat.

    I just feel so guilty, like I passed on these horrid genes to my child. Any suggestions to help make this weekend easier would be greatly appreciated. It is so much easier to deal with, you know trying to find the answer to your health issues; but when it comes to your child, God it is just so much harder. The guilt is so overwhelming.

    I apologize for this post being so long. I have found great strength and comfort here before during my struggle to finally figure out what was wrong with me. I am so hating myself right now for possibly passing on my poopy genes :( to my sweet little boy (eventhough he would say he isn't so little anymore).

    The poor kid lost 9 pounds last week alone with all the vomiting, thank God he had a little extra to loose.

    Thank you all for your support. It is people like you that give me the strength to keep fighting for an answer.

    P.S.- Sorry my last post was so long. Thank you for listening.

  5. Stephanie,

    My son is 13. He has to drink the phosfo soda as well. I hear there is a cherry flavor, have to find out about that. He is going to be under general anisthesia because of the endoscopy being done at same time. Thank God that he won't realize exactly what they are doing.

    For the rash that developes, when I do prep myself, I start off by using Balmax. It is diaper rash oitment for babies. Helps to coat the skin and rash doesn't get as bad if applied after each visit to throne.

    I wonder if the fleet soda stuff can be made into a slush, maybe that would go down easier.

  6. Well my son is going to have a second biopsy for celiac on Monday and they are also going to do a colonoscopy. The poor kid does ok for about 10 days to 2 weeks then begins vomitting for a week. Here is what we have discovered via testing in the last 6 months:

    celiac negative in August

    severe acid reflux

    5 esophagal ulcers

    Giardia in August

    Dairy intolorant diagnosed in December

    Bacterial overgrowth diagnosed in December

    My son started a strict dairy free diet in December. It is possible that he may have had dairy by accident over the holidays which may have triggered the vomiiting. I just don't know. Is it common to vomit for a week straight from one slip up? The diarehia has not cleared up either. Could it be celiac or gluten intolorant, could it be bacteria overgrowth........ It is so frustrating not knowing. The poor kid was racking his brain trying to figure out what he ate that he wasn't suppose to.

    Anyway, my question for other parents is this:

    Any suggestions on clear liquids, no red of course, that he can have for a day and half during prep for colonoscopy. Don't want him feeling like he is starving. He lost 10 pounds last week from vomiting. Also, any suggestions to make the prep smoother would be greatly appreciated. Is the prep harder on a child than on an adult, as in like crapping, etc.??

    We plan on driving the 3 hour trip to the hospital in the motor home. That way he can still go skiing with his ski club and start the prep on the road. We will be staying in a hotel once we get to Rochester, the poor kid would become clostophobic if he had to spend hours in a motor home b-room.

  7. Nancy,

    Trust yourself and the way that you feel. Tell your GI doctor that you would like the endo and a complete celiac blood panel done. Not sure how accurate a mini gluten-free challenge is, try it for a couple of weeks and see how you feel. Personally, I got my diagnosis from Enterolab after years of suffering, going to doctors that hadn't a clue and doing a gluten-free challenge on my own. As for the husband rolling the eyes, been there, done that, get that. Although, he isn't condescending, he still does not quite understand. Hang in there and seek out the answers you need by asking the right questions, researching and not giving up. It is very discouraging especially when it seems like no one understands. Hang in there and don't give up until you find your answer. Stick around here, lots of great advise from many people who have had similar experiances.

  8. To me at least, it sounds as though Olive Garden's response was in the form of a 'Legal Disclaimer'.

    Personally, I avoid Olive Garden, to my husband's dismay, simply because they specalize in Pasta dishes which, even if you order a salad or steak, there could be the possibility of cross contamination.

    I do not believe they have a specific gluten free menu and would not want to chance it.

    I do, however, recommend the Outback. They have a Gluten Free menu and I believe the founders wife has celiac so they understand the gluten-free diet.

    I have actually gone to the Outback and the server brought my shrimp appitizer on the bread after ordering from the gluten-free menu. After bringing this to the server's attention the manager came over and our $70 meal was on the house. I am now their best customer :P

  9. I am not sure which forum to post this under so I figure the moderators will move this to the proper location. Anyhoo, here is my question:

    Who started Celiac.com and is responsible for maintaining this wonderful website? I would just like to say thank you to whomever you are. You have provided a source of great knowledge and encouragement to all of those who have been fortunate enough to stubble upon you in our quest to find answers, support and encouragement. I could not survive a gluten-free life without you.

    Thank you from the bottom of my heart. Your efforts, and those of all the members of the forum are forever appreciated.

    Because of the advise of others here and reading there trials and tribulations, I, after 15 + years have finally gotten some answers. And more importantly, my son will not have to suffer the way I did because I now know that you have to question your doctors, ask them for certain tests and be vigilant in finding the answers and causes to the symptoms.


  10. The most excited that I have gotten was one day after reading about Philly Swirls here on the wonderful forum, I run up to the Mom and Pop grocery in my town to pick up some bread (NO NOT FOR ME OF COURSE). Anyway, as I pass the rather small frozen food cooler, out of the side of my eye I see none other than Philly Swirls. I literally yelled out "No way, I don't believe it" I bought up the four boxes they had, keep in mind I had never tried them, and proceeded home to become addicted. I jumped back into my car, drove up to the mom and pop store and asked to speak to the owner. The poor cashier must have thought she did something wrong. I explained my gluten issues to John (he went to school with hubby) and asked that he keep them in stock. Four days later I run up to the store again and the cooler is jammed packed with Philly Swirls.

    On a sad note, John put them on sale one time and all those people that can eat whatever they want bought them up. As a side note, John keeps an extra box in the back cooler just for me.

    Talk about getting excited :P:lol::D

    Next step, get some good gluten-free bread products in my little store.

  11. Yvonne,

    My son has the same symptoms along with actual vomitting. He had a Hydrogen Breath Test done for lactose intolerance which came back positive. This test can also detect bacterial overgrowth. It takes about 2 hours, other than that it is an easy test, you just blow into this tube every 30 minutes. Good luck and I hope you find the source of your symptoms. I know how frustrating it can be.

  12. Jen, the ulcers are from his acid reflux. I read that Eosinophilic Esophagitis can be aggravated by lactose if you are intolerant. My brain is so fried right now trying to keep up with researching possible causes, the doctor trips, the diets, the meds, the school work, etc.......

    I plan to put him on complete dairy free diet and take it from there. He is dreading the thought of gluten-free and can't blame him on that one. It is hard for me, but, I have no problem with dairy.

  13. My son's doctor called with the test results. He is definatly lactose intolerant and he also has some major bacterial overgrowth going on. I asked if this met caseine free as well and the nurse said no. She also indicated that the vomiting this time around was definatly brought on by the lactose he drank for the test. The doctor wants to wait to see if things settle down with the new diet and Flagyl. Here is my thinking however, the kid has missed 4 weeks of school already this year so I am going to request that they do the tests during the Christmas vacation. The doctor had told me that he wanted to check out how the esophagal ulcers were doing. This way I can ask that they do biopsy for eosinophilic esophagitis, celiac (again) and also look for inflammation. The poor kid got jipped on his genes pool. Mom is gluten intolorant, and Dad's side has the acid reflux and lactose intolorance.

  14. Jen,

    Thanks for the link, I will check it out after work. The last puke fest as he likes to call it these days was the week of November 7th. I took him off lactose but not sure if that helped. He tends to vomit for about 5 days and then he is back to normal so to speak. The big D never really goes away. Tuesday he felt fine so I am thinking the lactose solution did in fact trigger it but I don't know. It is very hard to keep a food journal with a 13 year old but we will give it a try. I just feel so bad for him and guilty that I can not make it all go away. Thinking gluten-free is the next step after second endoscopy, regardless of results. Being that it is my son and not me, I want to be sure that every other possible cause is ruled out. He may have lactose and gluten intolorance. I hope and pray that it is not Chrohn's.

  15. I have posted before about my struggles to find out answers to son's GI problems. He has constant D of course and has been going through several episodes of chronic vomiting. He has missed 4 weeks of school so far this year. Endoscopy in August was negative for celiac disease as well as blood work. He has severe acid reflux and 5 ulcers and taking meds for that. Tuesday he had the hydrogen breath test for Lactose intolorance and hoping to get results today. Prior to the breath test he was puke free for 2 weeks. The next morning he starting the vomiting again, doc office said that if it is in fact lactose problem that the stuff he drank for test could have activated the vomiting. My questions are as follows:

    Has anyone had hydrogen breath test before and if so what do numbers indicate. His baseline was .044 and throughout test numbers went down to .020, etc .

    Does anyone know about eosinophilic esophagitis? I think this may be an issue with his vomiting.

    Should I insist on another endo for celiac disease? The doctor is talking about another to check ulcers and also colonoscopy. May be looking for Chrohn's

    Any help would be appreciated

  16. http://www.csaceliacs.org/CDintheNews/COSp...zette091503.php

    Plus, I believe Kid Rock's sidekick, Joe C. died of complications due to celiac disease.


    Oh my God, reading this link has scared the poop out of me. My son's biopsy came back negative. We are still working to find the culprit to his problems, more than likely gluten intolorant in my humble opinion. He has been going through the same type of vomitting episodes that Brian Adair had.

    Should I request another biopsy? Could the first biopsy have been a false negative. I am panicking now.

  17. I would also like to offer my sincere appreciation for all the advise that I have received here. It has helped me in my struggles to find out what was wrong with me. Thanks to everyones experiences and posts I found the courage to stand up for myself with doctors and seek out the answers that I had been searching for for the past 10 years.

    My tummy, etc. THANKS you all very much :)

  18. I am so glad I asked and got confirmation to what I already knew. And, No the inlaws will not stuff the bird with my stuffing. Heck, my husband won't even go along with that one. As a matter of fact, two years ago it was my turn to cook and sister-in-law insisted on putting the family recipe inside my bird. I had to put my stuffing in a casserole dish in the oven, this was before gluten-free of course.

    I will make it a point to bring my very own turkey breast along with my gluten-free stuffing that I already planned to make.

    Thank you all for saving my holiday.

    As for the hubby and in-laws, Love ya all to death, hope you all get a big fat Gluten Bloat and fight over the potty all night on the 24th. :P:lol:

  19. This is my first gluten-free Thanksgiving and we are traveling to my sister-in-laws. My question is: If the turkey is stuffed with traditional family recipe (loaded with gluten) will the bird cause cross contamination? My husband thinks that if I eat a piece of breast meat that I should be fine. He thinks that the breast won't touch the stuffing or something. I am considering taking my own turkey breast, better safe than sorry.

    Expert opinions needed asap. :rolleyes:

  20. My son was dx with giardia in late August and give antibiotics. He did not get better and began vomitting, wasn't able to hold anything down the last week of Sept and again during the second week of Oct. So doctor gave him another round of antibiotics. Two weeks later the vomitting returned and he was given and anti-spasmatic med. It worked for vomitting but diarehia still present. Biopsy was negative for celiac disease by the way in early August. He is back to vomitting again. I wonder if he still has GIARDIA??? I hear that it can be pretty nasty. Are people with food intolorances more likely to contract parasites?

  21. I second that on the Namaste mix. More specifically the brownie mix. My birthday was 2 weeks ago and my son used the Namaste brownie mix (you will have to use egg replacer). He added choc chips to batter, split batter in half and put into 2 9 inch round cake pans. Baked and cooled. He then add gluten-free caramel between layer and frosted. I do not have a dairy problem so I'm not sure what you can use for a frosting. For the filling you may be able to use jam or jelly. My son, the little baker, is turning 13 next week and wants a gluten-free brownie cake rather than a regular cake. My entire family loved this and the 'Gluten Free boogy man' actually snagged my 2 pieces that were left over and desinated especially for me.

    We did try a gluten-free cake mix once and it was not good, rather flat looking cake. I do not recall the brand and I am in no way knocking any other brands.

    I am just very very pleased with the Namaste brownie mix :P

    Now I am craving some and have to can't have any until next week :(

  22. I love this thread.

    My birthday was 2 weeks ago and my son made me a Namaste gluten-free brownie (cake). He made it in 2 layers, added choc chips, choc frosting and crumpled up butterfinger on top. It was to die for. The entire family,) there are 7 of us here, my hubby, my son and four stepchildred) got a piece and everybody loved it.

    Well here is the ranting part, I get home from work and go to get one of the last two pieces that were saved just for me, the birthday mom that can't eat gluten. Well low and behold someone got into it and picked at both pieces leaving only the ends. They actually positioned the plate so it would look like a full piece. I was so upset I started to cray :( When I asked the 4 kids that were home, you know the ones that can eat anything in site, nobody seemed to know what the heck I was talking about :angry:

    So not only am I limited with what I can eat, when I finally find a good treat for myself I have to beware of the GLUTEN FREE BOOGY MAN :o