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About texasblue

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    Bradenton, FL
  1. Thank you for all of your responses. Crittermom, it means a lot that people do read the post and care. NewGFMom - I am realizing what a huge undertaking this all is. While we are doing the probiotics I'm going to do a lot of research. I do cook so hopefully this will help me out in the long run. I think we're all going to have to do it at home in order to stay sane. Glutenfreegirls - my 5 y/o is my middle daughter - she has a 7.5 y/o sister and a 2.5 year old sister. my 5 y/o is the only one who has these obvious issues. I guess maybe we'll find out if we all go gluten free who else it helps. Food has been a central part of social structures since the beginning of time, I'm thinking we just need to reorganize what kind of food is "special" and worthy of those significant celebrations I will do anything to help her but this all feels so daunting.
  2. Ridgewalker and Darn210 thanks for your insights. It seemed so much easier to think of gluten free when we were looking at an actual diagnosis of celiac. Especially since now that we are casein free she is starting to question why she can't have some of her favorite foods. She didn't mind not having the straight dairy/cheese but the casein seems to have hit her harder. I've been keeping track of her BM's for the last 8 weeks or so. I even took some pictures (gross!) so that if I missed one she could tell me which picture that it looks more like. How long does casein take to get out of her system? We've had just a couple of slip-ups when I missed it in a cookie and in the regular smart balance butter. When you do a food diary are you writing down absolutely everything? For the next step I'm thinking of doing the probiotics to start with while we continue with casein free and continuing to document her BM's. How long to know whether that is working? I know a lot of people on these boards have seemed to have gone gluten free "on their own". My worry is that as she gets older she is going to question why she has to do this. Right now she already tells me that she "feels fine and she doesn't want to see any more doctors!" (Amen to no more doctors!!). However, I don't think she knows any different, really! She has had belly problems since she was born, worse at some times than at others. We will do what is necessary to help her but it sure sounds tempting to do the Enterolab route where there is a piece of paper that gives evidence. Has anyone had luck with enterolab after doing gluten free for a while? Try gluten free to see if we see a change/difference. Then if it seems that we do see a difference to get back up confirmation with the lab? Thanks for answering some more questions. Do you ever feel like the lone fish swimming upstream?
  3. I am writing about my 5 y/o daughter. If you are willing to bear with me here is the long history: She bad reflux as a baby and into toddlerhood. She didn't tolerate formula at all (gas on regular and projectile vomiting on soy). We exclusively breastfed for 6 months and nursed until 15 months. and she would still spit up like a fountain - it was guaranteed to happen all day and night. The only thing that made any measurable difference was for me to never eat any dairy and of course we never gave her any. She took Zantac for those first few months and I drank gallons of camomile tea to help calm her tummy. She was extremely colicy/fussy until she was about 3 months old and then it was kind of off and on. During all this her Pedi would call her a "happy spitter" because she was never failure to thrive. In fact, she was the opposite - quite a chunker and growing really well. I figured she ate because her tummy hurt and wound up with so much milk that she just spit a lot up. She always got to that great hind milk that is so rich. My thinking is that she had Milk Protein Intolerance, at a minimum, as a baby. When she weaned we went to Goats milk on the advice our pediatrician. She had a bunch of sinus infections and antibiotics when she was younger than 18 months. By age 2 or so we started letting her have small amounts of lactose free milk and we thought she was doing fine. She was hitting all of her milestones except in speech. She didn't speak more than a handful of words until she was close to 2 1/2. By age three we thought she must have ADHD because she was a ping pong ball. She couldn't sit still to save her life. We were referred to an Occupational Therapist at age 3 and it was determined that she has mild/moderate Sensory Integration Disorder. So, that started 2 years of OT therapy that was actually quite helpful with lots of her behavior and speech issues. She does not have Autism. By her well child check up at age 4 she was having a lot of nasal allergy type symptoms and she had dropped from being in the 75th or so percentile of height in her first 2 years to now at the 25th percentile. There had been a slow drift down in her percentiles starting at around age 2 1/2 to 3. We noticed she always had a round belly, she had always had foul smelling, frequent loose stools, she had gas all the time, and still had wet burps. I can't remember a day in her life when she was actually constipated or even had a firm stool. This started a round of visits to the allergist to rule out an allergy (my mother has multiple allergies including wheat and other common foods, as well as severe environmental allergies). Nothing was conclusive but we started her on an allergy med to cover her frequent sinus infections and runny nose. He also suggested we remove lactose completely from her diet again based on her history as an infant. Her skin testing showed negative for wheat, soy and milk a year ago. At about age 4 3/4 she started to complain of her belly hurting, she began to have even more frequent bowel movements and her pediatrician was finally concerned enough about her height to send us on a GI consult. The GI doc immediately thought Celiac and sent her for lab. It all was normal except that she has low IGA, her IGG Anti Gliadin antibodies were slight elevated and she has the DQ8 gene ( which I also have - all other Celiac lab for me was negative as well). He still recommended a small bowel biopsy and biopsies for sugar metabolism. Nothing came back with any significance. By this time we have become completely frustrated and are beginning to question our decisions to continue to pursue this. The GI doc says he thinks her gut stuff and her height are unrelated and recommends an Endocrinology consult. She is still 25th percentile on height and about 60th percentile on weight. Her bone age scan showed her growth is about 1.5 - 2 years behind her actual age. We had the endocrine consult and she's holding steady at the 25th percentile for the last year . She says the bone age scan is good news because it means she still has more room to grow and it could just take her longer to get all of her growth in. All other endocrinology labs are normal. We have a height recheck in 3 months and will then see if there is anything worth continue to pursue. We don't care if she is going to be short. We just want to make sure that isis what her body is supposed to do and not that it is an underlying medical issue going on. (There are no truly short people in our family. Everyone is either average or tall. I'm 5'8" and dad is 6'.) The allergist wants nothing to do with the whole issue anymore. The GI doc all but said he thinks there is nothing he can see to treat. He dismisses Enterolab, bacterial overgrowth, or leaky gut issues and says he can't recommend a gluten free diet based on her negative biopsy. We have now had her casein free for the last six weeks. I've not seen any major changes in her bowels. She still has pale stools (light tan/yellowish) that range from soft formed to completely loose, a moderate to large amount each time. Her belly still hurts right before and during a BM but she doesn't complain at other times. She still "toots" frequently. It is actually rare for her to complain about any kind of pain. She'll go a few days and be fine and then have a few days where she's in the bathroom more often. The only real obvious thing I've seen is that when she gets whole wheat things she seems to have more trouble. In my mind I've got these choices: 1. Leave things as they are. She is not in so much discomfort that she is unable to do the things she likes to do. Certainly a tempting option and one I would do except that I have a feeling there really is something going on here. 2. Try probiotics to see if it is a bacterial imbalance. A reasonable less invasive option, I think. 3. Go through enterolab to maybe find out if she is gluten intolerant/casein intolerant. This option sounds nice on the surface because it is a more concrete answer, but it seems that Enterolab diagnosis a lot of people as gluten/casein intolerant and they seem to think everybody is. 4. Just do a gluten challenge, but for how long and to what extent and what happens when she asks when she is older why she has to follow this restrictive diet. Not to mention the challenges that are bound to come from every other corner of our lives! 5. Continue to pursue a traditional medicine reason - I'm losing more and more optimism from this option. We've had ZERO help from regular MD's. If it isn't in their medical textbook they dismiss us out of hand. I am feeling like a crazy mother chasing a shadow. So, after this hugely long post, does anyone have any insight? Thanks for reading this far, if you have.
  4. I just wanted to say "HI". We are still in the "figuring out" stage with my almost 5 year old daughter. We live just south of you in Bradenton but our Pedi GI is up there with All Children's and we were there last week for a upper endoscopy and biopsy. I am not qualified to answer any of your questions but I wanted to give you a virtual ((hug)) and tell you I know how you are feeling right now!
  5. Thank you so much for replying. My head is just spinning lately! Her biospy isn't until the 17th so I feel like I have a lot of time to think and wonder (and pray!). You know, I was wondering why they didn't run the IgG AGA and TTG as well. It was my general pediatrician who was ordering the tests based on what she understood the GI docs to say. At our GI consult he mentioned that there were a few more tests he would have ordered but I guess she decided not to do them yet. I think after the DQ8 gene showed up they figured the best course of action was to go for the biopsy. At our GI consult on Thursday he pretty much said that he thought she was "a good candidate" for being Celiac based on her symptoms. Especially her short stature and drop on growth curve. There is some question whether she has difficulty processing other "sugars" like maltose, sucralose, etc. When he does the biopsies he is going to send one to check for an absence of the enzymes related to those sugars. Do the subtypes matter very much? What kind of light will that shed on her probability of having Celiac? Thanks again!
  6. I have been searching these boards and the net this last 2 weeks trying to gather more info. The background: My middle daughter, she'll be 5 in June, is being evaluated for possible Celiac. The question of her having an intolerance was first brought up last spring when we thought she might have a severe lactose intolerance. She had been taking Lactaid milk since she was about 2 and we limited but did not eliminate dairy until last spring. She was starting to have explosive diarrhea then and I was noticing that her growth had really dropped off since she was 2 years old. (She was born in the 95th % and has slowed drifted down to now around the 20th percentile. Her weight was at the 95th as well and is now down around 70th so no, she's not a waif!). So, thinking that lactose was the issue, possibly, we took her off all straight dairy but did not hunt for milk in baked goods. She had a little improvement at first (with her gut issues, not with her growth) but has been starting to have a distended belly, lots of gas, and loose/diarrhea stools again in the last several months. A few weeks ago she was extremely distended and was having frequent complaints of her belly hurting so we took her back to the pediatrician to try and evaluate further. The pedi consulted with a couple of pedi GI docs and said that they would want to rule out Celiac first. So, the lab work we have so far is: Total IgA level #1: 16 = Low Total IgA level #2: 21 = low IgA 1 = 21 low IgA 2 <1 low Total IgG =964 (normal between 353-1350) with IgG normal for subclasses 1,2 &3, borderline low for 4. IgA TTG<3 (negative <5) HLA-DQB1 03(DQ8) HLA-DQB1 - (DQ-) HLA-DQ2 negative HLA-DQ8 positive CBC panel was completely normal except for slightly high platelets. TSH 1.63 She's scheduled for a small bowel biopsy for 4/17 but after reading so many posts on this board I am wondering how likely it will be that she even gets a positive result. Can anyone help me interpret these results? I know the DQ8 gene is the rarer of the two and that the low IgA is more common in celiacs than in the general population so I am guessing her chances of having it are greater than most, right? Any light anyone can shed on this would be appreciated!
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