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Mayam

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About Mayam

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  1. Hi,

    I breastfed all 3 of my children until 14 mos. old. I wasn't diagnosed with celiac disease until after I was finished breastfeeding my 2nd child. My oldest daughter had mucousy bowel movements, almost since birth, which the dr. could never figure out. She also had mild reflux. My 2nd had terrible reflux and mucousy diapers, as well. My oldest was diagnosed at age 3 (a month after I was) and my middle had pos. bloodwork and neg. biospy (inconclusive) at 20 mos. (I believe she does have celiac disease). My youngest has been gluten-free since birth and will remain that way until he is old enough to eat gluten and be able to tell if he has a negative reaction to it.

    It is a difficult decision for you, especially since you won't be the one breastfeeding :) Like Suzie said, your wife could breastfeed and look for signs of celiac disease. Or, as others suggested, maybe she would be willing to go gluten-free. There is so much development that occurs in the early years, it's scary to think of compromising your child's health. I keep my son gluten-free because I saw how my daughters (my oldest esp.) were affected at such an early age. It may be controversial to keep your child gluten-free when you have no way of knowing whether or not they will develop celiac disease, but I feel that I am responsible to give my son the best and healthiest start possible.

    This is just my experience. Best wishes for a healthy and happy baby!

    Rachel diagnosed and gluten-free since 2003

    daughter, age 6 (diagnosed and gluten-free since age 3)

    daughter, age 4 (gluten-free since 20 mos.)

    son, age 2 (gluten-free since birth)


  2. txnmaryann,

    I know how you feel. Two years ago at age 30 (one year after I discovered I had celiac disease - age 29) I was diagnosed with osteopenia- they wanted me to be on gluten-free diet for at least one year before they would give me a bone density scan since they say you can regain some bone mass in the first year. I take Actonel 1X wk and 1500 mg of calcium + magnesium each day. I also lift weights, which I've been doing for 10 years. I am hoping to have another scan soon to see if I have regained some bone density, or at least stopped losing bone mass.

    I know how frustrating it can be to be so young and have to worry about something that most people don't have to worry about until much later in life. Sorry, I don't have any knowledge about if you can regain bone mass, but I just wanted to let you know that I understand how you feel. Best wishes for a positive outcome on your next dexa scan and may you now have many years of good health!

    Rachel (diagnosed by bloodwork and biopsy, gluten-free since 2003

    daughter age 6 (diagnosed and gluten-free since age 3)

    daughter age 4 (pos. bloodwork, neg. biospy - inconclusive but gluten-free since 20 mos.)

    son age 2 (gluten-free since birth)


  3. Hi,

    I posted this on the travel board too...

    I'm going to Santa Rosa next weekend and wondering which restaurants would be a good choice for a celiac? I've heard of a Thai restaurant, Jhanthong Banbua, and know that there are gluten-free dishes at Thai restaurants. However, I've never eaten at a Thai food place and am wondering which dishes would be gluten-free?

    Thanks for any help and suggestions!


  4. Hi,

    I know the reasons why we are currently not approved to eat oats, but is there anyone here who eats oats? If so, where do you get them from so that they are not "contaminated"? I've heard some things about Irish oats. Any problems from eating them or other oats?

    Thanks in advance,

    Rachel - gluten-free since 2003 (diagnosed by bloodwork and biopsy)

    daughter age 6 - gluten free since 2003 (diagnosed at 3 - bloodwork and biopsy)

    daughter age 4 - gluten-free since 2004 (positive bloodwork, negative biopsy, 2 genetic markers at age 22 mos.)

    son age 1 1/2 gluten-free since birth


  5. Hi,

    Myself and my oldest daughter, who is now 5 1/2, were diagnosed 2 years ago. My middle child had bloodwork done around the same time as our biopsy, she was around 20 mos. Some of her bloodwork came back positive so she also had a biospy, which came back negative. I considered it inconclusive due to her age. I was also not clear on if the ped. GI biopsied more than one part of her intestines. I also have a 14 mo. old son. At our house we are all gluten-free, even my husband who is not a celiac.

    I had been wanting to do a genetic test and pay for it out of pocket. However, at one of my celiac support group meetings someone told me about a blood test that runs all the tests you should have to determine celiac disease and if it comes out negative they will automatically test for the genes. I had the test done on my son and middle daughter. Of course their antibody levels were normal since they are gluten-free. They automatically tested their genes and my daughter has two genes and my son has one. I think it was called Celiac Plus panel or something like that. The test is done through Prometheus labs.

    I too refuse to put my children on gluten to have a biopsy done. I saw what happened to my oldest before she was diagnosed at 3 1/2 and I will not make my children sick, at least while I'm in control of what they eat.

    If your child's test reveals they do not have the gene, they will never develop celiac disease. However, if they are like my kids' tests you will know that they may develop celiac disease sometime during their life.

    I think that it is a personal choice as to how to proceed if you receive results that your child does have the gene. (I don't think you stated but if the EMA was positive and the gene is positive it seems that it is assured that your child has celiac disease). I for one, will not give my children gluten and possibly make them sick, especially when they are children and developing so rapidly. When my two younger children are older, at some not yet determined date, I am going to allow them to eat gluten and then observe them. We can worry about their reaction at that time.

    Hope this helps you out a bit,

    Rachel

    daughter age 5

    daughter age 3

    son age 14 mos.


  6. Hi,

    My oldest daughter had her biopsy at 3 1/2 and my youngest daughter had her biopsy at 20 months. We had a great experience at the hospital where the biopsy was performed. They scheduled the earliest time for the procedure since the girls were not allowed to eat when they woke up in the morning until after the biopsy.

    We went into a special room with lots of toys and movies. The girls got to pick out special toys to keep and someone came by and explained the procedure and showed them age appropriate pictures. Another lady came by to sing songs and she brought her cart with musical instruments.

    My husband held the girls when they put them under the general and then they put them on the bed. The anesthesiologist was wonderful at explaining what would happen when they put them under. It was a little bit scary because their body jerked and then they went right to sleep. Even though you know they are asleep it's hard to see your children go to sleep like that.

    The biopsy is considered the gold standard for diagnosing celiac disease. The ped. GI that performed my oldest's biopsy was able to tell us right then that from what he had seen it appeared she had damaged villi consistent with celiac disease. He also confirmed it when the biopsy was examined. My youngest had positive bloodwork but a negative biopsy. I consider her biopsy inconclusive since I feel that she may have been too young to show much damage. I'm also unsure as to if he biopsied more than one part of the intestines.

    The girls were not in pain when they woke up from the procedure. I have also had a biopsy and it was not painful.

    Hope that helps,

    Rachel


  7. Hi, I dive also and would love it if we could get a response to this post. Maybe you could post your question on the travel board, if you haven't already.

    Since I've been diagnosed I've been on one liveaboard to the Channel Islands (So. Cal), Truth Aquatics. Mostly we dive pretty local. I live in Sacramento, CA and we dive mostly the north coast (between Fort Bragg and Bodega Bay, if you are familiar with the west coast of CA), Monterey and Tahoe. We've also dove in Hawaii.

    I would love to do more traveling and diving, but with three small children we are limited with time right now.

    We are hoping to go to either Cozumel or the Cayman Islands next year and I was wondering the same thing about hotels and how accomodating they are. Often when I travel now I get tired of explaining what my dietary restrictions are and I just try to eat things I know are gluten-free. However, I would think this would be difficult in Mexico since you aren't supposed to eat fresh fruit and vegetables.

    Please let me know if you go onto another board and receive a response to this question.

    Best Wishes,

    Rachel - diagnosed by biopsy 9/03

    daughter age 5 positive biopsy 8/03

    daughter age 3 positive bloodwork

    son 13 mos currently awaiting genetic testing


  8. Hi,

    I am making a birthday cake and icing and I am wondering if anyone knows which food dyes are gluten-free? McCormicks has many spices that are gluten-free but I'm not sure about their food dye.

    Cake Mate colored frosting (in the plastic tubes) used to be listed in the gluten-free Product Listing Guide as a gluten-free product, but it is not listed in the 2004 Product List Binder. Does anyone know if this product is still gluten-free?

    Lastly, Cake Mate sprinkles used to be okay as well. They are also not in the new product list - are these still gluten-free?

    I could always call the company, but I keep forgetting until after business hours and I need to make the cake on Friday!

    Any help is appreciated!

    Thank you,

    Rachel

    diagnosed in Sept. 2003

    daughter (age 5) diagnosed Sept. 2003

    daughter (age 3) inconclusive testing but gluten-free since Feb. 2004

    son (almost age 1!) gluten-free since birth


  9. Hi,

    I see there is already another post about Disneyland. I'm trying again w/ this topic to see if there are any new responses.

    I can't remember where I read this info. (somewhere on the web) that someone had received an e-mail from Disneyland that contained a list of all the food venues in the park that had gluten-free items.

    Myself and two daughters have celiac disease and will be visiting Disneyland in Aug. I e-mailed Disneyland customer service a couple of months ago about this list and received no response.

    My plan is to bring snacks and sandwiches for my daughters, but I wanted to allow them a treat or two a day at the park. Does anyone know what kind of ice cream they serve? Are there any places that serve ff or hotdogs that are gluten-free? I'm sure we can find a place to buy m&ms and other gluten-free candy, but I was hoping for something different.

    Any help is appreciated!

    Thank you,

    Rachel - gluten-free since Sept. 2003

    dd age 5 - gluten-free since Sept. 2003

    dd age 3 - gluten-free since Jan. 2004

    ds age 10 mos. - gluten-free since birth! :)


  10. Hi,

    I agree with the 2 previous posters. I would ask for a copy of the results. My second daughter had one positive test and two negative (I can't remember which ones and have since misplaced the copy of the test), but when I called to get the results the pediatrician's aide said the tests were all fine. After requesting a copy and seeing an elevated result I asked for a referral to the ped GI. He told me that anything elevated looked suspicious and he did a biopsy. Her biopsy came back negative, but I consider her inconclusive. For one thing she was not quite two which could mean minimal damage to her villi, and I'm not sure if he biopsied more than one part of her intestines. I also believe that something is not quite "normal" if one of her test came back elevated.

    Myself and my oldest daughter also have celiac disease and I have found that most GIs are not very knowledgable about celiac disease. Therefore, I have made the choice to put my daughter on a gluten-free diet. When she is old enough to decide if she would like to eat gluten, then she is welcome to. We will deal with the negative results, if any, at that time. I also have a 5 mo. old son who I will keep gluten-free until he is older. I just can't feed my children gluten when they have a genetic tendency toward celiac disease, knowing I could be making them sick and affecting their development.

    If you never get a conclusive result you may just have to decide to keep your child gluten-free and see what happens.

    Good luck!

    Rachel


  11. Hi,

    I have an almost 5 yr. old, almost 3 yr. old, and a 5 mo. old baby. My 5 mo. old was the first baby I had while knowing I was a celiac and while I was on a gluten-free diet. I took Stuart Natal prescription vitamins - they are gluten-free. While I did not have any morning sickness throughout any of my pregnancies, I always got extremely nauseous if I took my prenatals without food. Even if I took my vitamin 2 min. before the food I would get sick. I had to take it WHILE I was eating. Also, I've heard some people take it at night with a little bit of food, right before bed. That way they'll sleep through it if it makes them sick. I still take Nature Made prenatals since I am breastfeeding and I still get sick if I don't take them with food.

    Best wishes for a healthy pregnancy.

    Rachel


  12. Hi, I'm fairly new to this board. I've posted a couple of times since my diagnosis in Sept. 2003.

    I have celiac disease, as do my two daughters, 4 1/2 and 2 1/2. They ate "regular" solids until their diagnosis in Sept. 2003. I now have a son who is almost 5 mos. I will be starting him on rice cereal, then baby food, after 6 mos. and I plan on feeding him only gluten-free. I will not have him tested and I will most likely keep him gluten-free until he is able to make the decision to eat gluten. Then we will see what happens and/or have him tested, blood and biopsy. This is not a difficult decision for me, as I can't in good conscience feed him gluten knowing he has a family history of celiac disease.

    Since he is my only child born since my diagnosis I do not know if Gerber rice cereal is gluten-free. Any idea about jar baby food? Also, I've had no success finding a gluten-free equivelant of cheerios. If there is anyone who has been through this with a celiac baby and can offer advice or info., it would be greatly appreciated.

    Thanks in advance!

    Rachel


  13. Hi,

    This is my first time posting on this board. My oldest daughter and I were diagnosed with celiac disease in September of 2003.

    I just discovered I am unexpectedly expecting child number 3. With my 2nd daughter I had ppd, but chose not to take anti-depressants. I'm considering taking anti-depressants, if needed, this time around. Does anyone know which anti-depressants are gluten-free. I will need to take SSRIs.

    Thanks in advance for your help!