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LisaP

Pediactric Gi Doctor In Dallas?

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I am looking for a Pediatric GI doc for my children. I want one that supports Endolab and Dr. Fine's philosophy of non-evasive testing of children....especially since I, the mother, am the one with celiac disease and I need to have my children's high IGG blood tests reviewed by a professional.

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Hi Lisa,

I take my 12 year old daughter to Dr. John Baker in Carrolton. Our first visit he spent

at least 45 minutes (my daughter says an hour) answering my 100s of questions about

celiac. My daughter's test and biospy were not performed by Dr. Baker and I'm not sure

if he ever deals with Dr. Fine but he was very knowlegable about the subject and was

willing to spend as much time as I needed to talk. I found him on the www.dfwceliac.org.

This site has been pretty useful for info around dallas.

Tiki

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ok this is my first post so bear with me....

I have a 12 year old son that was dx in Feb. His biopsy was neg. but all the systoms seem to be in line with Celiac. He has have been Gluten Free since with major improvements. I am also considering looking for a Pedi GI in the Dallas area (we live in East Texas) I am very concerned about things like nutrition. He has lost 12 lbs since Jan.

Was Dr. Baker very helpful in this area?

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My daughter was never formally diagnosed. Last summer/fall. she was having constant stomach pain

for several months. I took her to a pedi gi that was resistant to running the panel (although her

aunt was diagnosed with celiac in the 70s). Her panel had a few numbers that were elevated and she

had a biospy that was negative so the first dr. said she didnt have it. In October, after a few more months in pain,

we had her go gluten-free and she started feeling better within a week. Now the only time she is ill is when she gets gluten.

I have no doubt this is her problem.

We went to see Dr. Baker for the first time in March. He seemed very knowlegable about celiac which was different

than any of the other dr.s that I had talked with. That includes the orginal pedi GI, an adult GI,

and 2 family practiciners. I didn't ask him very much about nutrition. My daughter seems to have adapted to the

diet fairly well now although it took us a while to find foods that she likes and are gluten-free.

Is your son losing weigh because he is basically on the Atkins diet and is having a hard time finding things he likes to eat

or is he eating a lot and still losing weight?

I'm sure Dr. Baker could answer most questions that you have and will spend the

time with you that you need. It was just such a relief to me to FINALLY find a Dr. that didn't think celiac was rare

and that could/would answer my questions.

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Hi tiki,Thanks for you reply.

I'm starting to second guess our dx. Our GI that did the neg. Biopsy sent lab work to Prometheus and it returned with no genetic markers. Do we really have Celiac?? His symptoms were stomach/chest pain, and anemia. His iron level has dropped despite taking iron by RX. so it seems we do. (no know relatives with a dx)

My statement major improvements now seem overestimated. He was doing better and now seems to be regressing. At the Dr. office yesterday he weighed in at 77 (started at 93). He won't eat anything now. We have so many foods that haven't changed, but he is simply not hungry. We have (and still are) stuck to the diet with no know accidental ingestions. Now we are having new stomach pains. He says these feel different. I certainly don't want to overlook anything else.

The only Dr. that is concerned is his regular Pediatrician. He also was dx with a (non relating) mild case of scoliosis.

I'm so glad you have found a Good Pedi GI and that your daughter is improving. If we receive no relief with our GI, I will keep Dr. Baker in mind as we are still looking for answers. I can't sit by and see him continue to lose weight. He has gone from a healthy, happy, active boy who plays sports to one who can barely make it to school each day :( .

LisaP

did you find a Dr. yet?

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Hi Red,

I would be concerned. Losing that much weight so quickly is not good.

It does sound like there is something else going on too. Maybe he have issues

with lactose too. I've read that some people with celiac have issues with lactose until their intestines heal.

Or, maybe if he can still have some of his favorites, he might be more tempted to eat. I know it's not incredible healthy but we've found we can still eat some fast food at Mcdonalds - fries and a burger without a bun. Also have found kinikinik (I know I spelled that wrong), has great tapicoa bread and chocolate covered donuts. And Amy's has a great rice crust frozen pizza. We've also found some gluten-free chicken nuggets that my daughter really likes. It could also be he's a bit depressed knowing he will have to be gluten-free for the rest of his life. It really is an adjustment and can seem overwhelming. Have you found a good store to buy gluten-free stuff?

Don't take me wrong, I am not saying this is just in his head. I HATE it when people seem to think the problem is just mental! If you don't get answers from your current dr. I'd definitely pursue it with another dr. You know your child best and if something doesn't seem right, don't give up. Eventually you will get it figured out.

After months of worrying when my daughter was ill, I know how hard/frustrating it is. Best of luck and let me know how he is doing.

Tiki

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Hey Tiki,

Don't worry , I didn't take you wrong. Thanks for your concern :)

We were told to stay away fom lactose in the beginning and could reintroduce it first of April. I have only used small amounts in cooking. I'm not ready for him to drink whole regular milk yet.

We have found our special treats in the waffle fries at Chick-Fila :D

Even last night he didn't get to excited when i mentioned them though.

Our health food store doesn't stock a variety of things. The waffles he likes. I have thought about coming to Dallas to shop at Whole Foods Market. Are they a good store? lots of items?

Actually right now we are having a reaction of depression. He seems so down all the time. The Dr. recognized this and attributes the lack of food interest to it. We are discussing alternatives.

Red

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Hi Red,

My daughter was a bit depressed too at the beginning. Everytime she wanted to eat something she couldn't and she felt like she was the only one out there having to deal with this. She was frustrated. Once we started finding more items that she could have it got better. This past weekend she made some gluten-free tollhouse cookies that tasted just like the original and she also made a gluten-free Devil's food cake that was pretty good. We purchased several gluten-free cookbooks and that has helped.

Does your son know anyone else that has this? Maybe talking with someone else who has it would help. I know one time when my daughter was upset I had her get on the teen board and read some of the entries just to see that it was not just her. That seemed to help.

I do most of my shopping at the Natural Health Market (NHM) in Frisco. The great thing about this store is that the gluten-free items have blue dots on the shelves so you don't have to read all of the ingredients. They also have a smootie bar there and it is about 1/2 mile from Stonebriar mall. IF you haven't been there, maybe a Saturday trip to the healthfood store and a trip to the mall might cheer him up. The mall has Galyan's sporting goods store with a rock climbing wall that he might find fun.

NHM has a wide variety of frozen gluten-free items. donuts, bagels, breads, cinnamon rolls, muffins that we keep in the freezer and they last a long time and taste good. Also some cood crackers, rice pastas, and all the flours you need for baking. The people there are very helpful too. The store is not very big (like whole foods) but has a fairly good selection.

LEt me know how it goes.

Tiki

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OK, I don't mean to derail this thread, but I had to jump in! We will be moving to Texas in a couple months, and my daughter was just diagnosed last month, so we will need a new GI specialist and a new regular ped. We will be in either Tyler or Longview (or in between!) so Dallas would be too far for a regular ped, but I figure we will either need to go there for the Ped GI, or to Shreveport. I know someone had mentioned East Texas, so I thought I would try! Thanks!

Michelle

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Hi Tiki

Found another treat!! Blizzards at DQ. after the day we had today he deserved one. Not crazy about that much milk product but it didn't seem to affect him.

The Dr told us that that the Promethues panel he ran was very acurate and he rules out Celiac. We will still continue our gluten-free diet as it has helped. He can be gluten intolerant in addition to??? We had more testing today...he is looking at possible Crohns :( .

That thought is scary. We have the Capsule Endo on Mon. it seems like way to much testing for a 12 yr old. he's so spent...but until the pain can subside we will keep looking.

I'm thinking a trip to Dallas will be worth it for food. We have family in the Carrollton area to stay with and we love to go to malls, etc... We haven't met anyone else that he can relate to with this. I tried to get him to surf the net looking for info and talking to others...not interested yet. If you have a fav brand of bread items please let me know. everything bread so far has been yuk.

Hi Michelle

I think I am the one who jumped the track :lol: This thread started abouts docs. I'm just a big rambler

A big welcome to East Texas. We are here in Longview. We have a lot of great pedi's here and our GI is staying right there with us working for a acurate diagnosis. I don't know any Dr's in Tyler but I would be happy to tell you our Dr.'s if your looking in Longview.

May I ask how old you daughter is? Do you have a preference (male/female) for a Pedi?

Tiffany

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Glad the two of you got together! I started this post and had no idea where it might go. Say a prayer for us. I am taking my two kids to see Dr. Annette Whitney @ Medical City in Dallas tomorrow. Hopefully, she will be able to help me understand their high IGG blood tests.

Red, I thought the R.O.C.K. (Raising Our Celiac Kids) group might be able to give your son a contact of someone his age that has been through what he has been through. I know he does not have Celiac, but maybe this would work.

Kelly LeMonds is the Coordinator.

R.O.C.K. Chapter Leader, Wylie, Texas

Kelley LeMonds

dallasrock@dfwceliac.org

(972)-489-9915

My prayers are with you!

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Hi LisaP,

Good luck with your appointment tomorrow. I will say some prayers for you. Dr. Whitney was our first GI dr. She didn't diagnose my daughter with celiac disease but from my understanding there are several members of the North Dallas Rock group that she did diagnose. I will put your family and Dr. Whitney in my prayers tonight. Let me know how it goes.

Tiffany,

Sorry to hear your son is having to go thru more tests. I know how difficult that is on both of you. I sure hope they figure it out soon. I hated that helpless feeling of not knowing.

The bread my daughter likes the best is the Italian Tapica Bread made by Kinnikinnik. I've also heard their cheese bread is good too. Do let me know what you find out. I'll add you to my prayer list too.

Take it easy and take care.

Tiki

Ps. Michelle welcome to Texas too!

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Tiffany- Why thanks for the big welcome! We are so excited, only 69 days until we leave! We have family in Henderson, but I have found anyone who doesn't live in the immediate area doesn't know where that is! I would love to live in Henderson, but we just don't know where we will be able to find a rental. Anyway, Longview would be great to find a Dr in. I was told by a relative not to see any doctor in Henderson, so I figured either of those towns would work! My daughter is 4-1/2, and she is more comfortable with women doctors, but my main concern is someone who knows what they are doing and puts some stock in a mother's intuition! And then of course there is the fact that we adopted our son, and he is African American. I want to take both my kids to the same Dr., so someone who is positive about all that would be necessary as well! There was one doctor at our practice who we kept seeing and everytime he saw James he would assume he was a foster child and kept asking if the mom was coming back in the picture. I know for a fact his chart said ADOPTED across the top, so what's the deal? Now that he is getting older (16 months) I would like to avoid that kind of thing! Hmmm, what else can I be picky about!!

I am so sorry you are having so much problems finding out what is bothering your son! I did remember reading that a Zinc deficiency can lead to loss of taste and appetite. I know when they aren't eating of course they are not getting all the nutrients they need, but maybe a supplement could help. Not that I am saying that this is all that is wrong by any means, but that weight loss would really worry me, and so I am sure you are doing anything you can to keep some weight on. I hope the testing on Monday gives you some answers!

Michelle

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Lisa,

Thank you for the info on the R.O.C.K. I wish we a had a chapter around here. i will give them a call...never know what can happen. There are some kind of support groups here but we haven't tried them yet. I bought Danna Korn's book and am really enjoying reading it. I highly recommend it!!

Hope your appointment went well today. I'm looking forward to hearing about it. Please keep us posted on your progress with your new doctor and my prayers are with you too.

Michelle,

I have been to Henderson a few times, not to much there but a nice little town. (I like the bigger city myself). I agree it would be nice to be around family.

That great that you have opened your home to adopt a son.

I have a co-woker who's Pedi is a female, Dr Robertson. I have heard from many that she is very attentive. There is also a PA in town, Dr. Russell, that my friend just loved!!

Tiki,

Thanks for the bread tip. I've seen the Kinnikinnik web site and have been tempted to order the sampler basket...maybe soon.

Thank you all for your thoughts and prayers. We found out today that there is a clear path in the intestines with no blockages so we can go ahead with our procedure Monday.

And I was just hoping he had swallowed a marble and all this would be over with :blink:

Red

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Well, we saw Dr. Whitney today and after discussing each child individually, reviewing family history and watching her eye brows go up when she saw their IGG blood test results. The verdict is Austin is going to have an upper endoscopy in two weeks. Since he is my child and eats out of my gluten free kitchen, we do not have much gluten in the house.....so for the next two weeks he gets to eat as much gluten as he would like. And since he is just like me in the fact that there is little to no visible reaction to gluten, he thinks this part of the proceedure is going to be alot of fun. We had to stop by the store to buy some crackers, waffles, and cookies with gluten so he would be able to eat it. On May 4th we will do the procedure. I think it is going to be harder on me and my husband than it will be on him. He is a real trooper, but he is unsure about this whole thing. Either way after the endo. we will be as gluten-free as possible.

Sydney, my 3 yr. old shows no obvious signs and her gut area feels very normal to the dr. So, we are going to go as gluten free as possible with her and keep a close eye on her. With the high IGG, I think the odds of a gluten intolerance are great. So, hopefully gluten-free will keep Celiac away.

Good luck finding good doctors, getting settled in, and finding the results you need for your kids. You are good parents and your children are lucky to have you caring for and loving them.

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Desperate mom in Round Rock, TX. Daughter is 15 with migraines, nausea, stomache aches, constipation, sometimes diarrhea, rashes, and as she said many of the other odd things listed on someone's list of symptoms that we had not see on the official lists!

2 yrs ago Celiac's was brought up by her Peds. Dr. in Hillsboro, OR, blood test done, showed maybe Celiac (iGa, etc. off), but biopsy neg....so we went on with trying to figure out what was up. 6 mos later the biopsy was run again once we moved to Austin, TX. Still neg.

Daughter's migraines worsened. Was diagnosed a month later with seizures. I am cutting out a lot of crap we went through. That was a year ago. Headaches and daily migraines now, pain in her legs.

ANA test cam back Reative antinuclear antibody titer 1:160 speckled pattern....saying basically she does have an autoimmune disease. UGH! Rheumatologist and neurologist want her treated by a gastroenterologist, but need to find a good one. The last 2 have blown us off and my daughter is suffering. The Dr.s can't agree about what's wrong.

Anyone know of a good Gastro in Dallas @ Children's where we had a recommendation to have her seen...or Austin, but we've tried here without much success.

Merrie'

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Merrie,

We are also new to Texas, weird thing is that my kids' pediatritian was also in Hillsboro, Or before we moved here! (we lived in Forest Grove) Small world! OK, since coming here we took Ashlee for a follow up (she was diagnosed w/celiac disease at Emanual back in OR last year) and went to Children's in Dallas. We saw Dr. Anderson as I was told he was the one who knew the most about celiac disease. To tell you the truth I had mixed feelings about him. He seemed very knowledgeable about celiac disease in some ways, but there were just little things, like he didn't think teflon pans could possibly retain gluten, things like that. He also said he doesn't usually do blood tests unless he feels there is a problem and mentioned IBS when I complained about the symptoms my daughter is still having. However, I called back since she is still having symptoms and requested a blood test which he agreed to. Basically, in a nutshell I think he is very useful, and might be helpful to you. I have just found that with any doctor, you have to know what you want and work with them to get it! If you have a referall to go to Children's, I would go see him. All we can do as parents is keep trying until we get the right answers right? I do know that a negative biopsy can't really rule out celiac disease. I think sometimes it they just can't seem to get the right spot. Where did she have the biopsy done? I know after we saw Dr. Marshall at Emmanual I was talking to someone from a support group who was impressed that he had done so well, and mentioned that he must have come a long way in learning about celiac disease. Not to bash him, he was truely a lifesaver for us, but we saw him March of '04. It sounds like you're daughter would have been earlier than that. Just a thought! Sorry I am not more help with the actual symptoms, but if there is anything else I can help you with, please let me know!

Michelle

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To tell you the truth...not sure I could deal with one more Dr. with a bad attitude!! We've heard everything from she is just depressed and doesn't want to got to school (this shen she was throwing up in my garbage can or the toilet if I'd take her , I worked at her school, or haviing seizures and then wanting to go to sleep) to take her to pain management for the pain (instead of treating). This mind you after she fell and broke 2-3 ribs and tore up her knee, which it took us 6 months to convince someone to operate on. :wacko: Her physical therapist is the only one to recognize Chelsea's willingness to work hard to recover. Everyone else kept acting like she was just exaggerating how bad it hurt.....exaggerating....she got up and walked off the volleyball court (or out of the bleachers where so dove for the ball, actually) after being injured...how many could do that after fracturing 2 or 3 ribs, tearing th miniscus and ACL in her knee! :angry:

Have an appt with one here in Austin on March 1st with a Dr. taht I discovered last night actually is listed by one of the websites as an authority on Celiac's. Dr. Lubin?? Anyone heard anything about him?

Merrie'

Daughter Chelsea, age 15

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Merrie'

I am so sorry for all your frustration! I totally understand not being too excited about going to another Dr. who will blow you off! Have they done blood tests for celiac disease? This is just me, but I think if I had a feeling it could be Celiac and couldn't get through to the Dr.s, I might try the gluten free diet to see if there were any results. You could keep your appointment, but March 1st is still a long ways away when she is suffering! It would be a pain without knowing for sure that it was helping, but I would think between now and the appointment you would notice some improvement at least if it is in fact celiac disease. The only downside is that she definately won't test positive if she is eating gluten free, but if tests have been inconclusive anyway, that mignt not mean a lot! I just noticed that you did have blood tests done back in Oregon. If you could have someone order the blood tests again you could compare the results as well. You might even be able to have someone do that (her primary Dr., or bug one of those Drs who blew you off and just tell him you are the parent, and you want this ruled out!) now, so you would have something to go off before waiting until March.

I hope you can get some answers soon and your daughter will be feeling better.

Michelle

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They are now telling me at another Dr. that her Neurologist refered her to that the blood test was neg when run a yr ago...when she had 2nd biopsy. Disappearing - reappearing iGa? :huh: Ugh! But the other test, ANA, shows a problem. Her migaine is a 6 again today!!! (1-10) scale. The pain meds hardly touch it. It's ridiculous!

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AAGH! I feel your frustration! So did they just run the second blood test at the same time as the second biopsy? How confusing! The AHA test that was positive was just for an autoimmune disorder in general, is that right? I have also heard to make sure the lab is done at a recognized lab. Since Ashlee's came back positive before I even read that, I didn't think much of it, but with the results your daughter has gotten, maybe see where the labs were sent. Where was the first blood work done through? My kids' pediatrition in Oregon was Dr. Mandi at Hillsboro Pediatrics, they also have Dr. Dahlquest, Naason, Brown and Krupa. Is that where your daughter was seen? If so, did they do the blood work or send you to a Ped GI to have it done? All they did was stool tests through Tuality for Ashlee, then they referred her to a GI specialist at Emmanuel who ordered the blood tests. I don't know if it would make a difference who they were through, just trying! I really don't know anything about other autoimmune disorders, but I would maybe research into other ones as well, just to see. It sure does seem like she has a lot of Celiac symptoms though. You might also try Enterolab. I know a lot of people on this board have been diagnosed through them and really trust them. It would at least be something else to check.

You might also want to start a seperate thread asking about the new doctor in Austin. Someone may know about him, just not be reading this thread about Dr.s in Dallas. Have you contacted any support groups in Austin, they might have some first hand knowledge about him as well.

Good luck,

Michelle

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How funny. My kids saw Dr. Dahlquist. She's a family friend, as well as their Dr. She went to our church. The tests were at Tuality by a GI there. My husband was hired on by Dell after frist Sequent sold out, then IBM shutdown his Div, then Toshiba shutdown.... we decided to get out of the NW. They are getting her in on Monday, but am worried that they won't help her. We've had so much conflict over test results. Yes, the biopsy and 2nd set of blood tests were done at the same time. She really doesn't have the symptoms of other autoimmund diseases, like Lupus, Sjogren's, etc. She doesn't run fevers or have most of the other symptoms. Many, many of the Celiac symptoms that people mention...could she just be wheat intolerant???

She just had a really bad episode....migraine up to a 6, stomach hurt as bad as one of the times we had to rush her to ER. She was moaning...SCARED ME!!!!! :(

She was talking about eating biscuits and gravy, I was like :huh: ? I didn't fix that! :o Grandma did! :( She is now insisting she's not eating any more gluten! ;) Maybe she has an allergy?

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That is funny! My kids saw Dr. Dahlquist, but we just really clicked with Dr. Mandi. I also know Kay Green, we talked about adoption stuff, and she mentioned that she went to church with Dr. Dahlquist too! Our pastor's wife had told me about Kay when we first started looking into adoption. Here I was getting so homesick! We moved to East Texas this past summer since my husband has a lot of family out here. He could use his B.S. in Social Work to start teaching through a special program out here while he gets his Teaching Certificate. So, God opened the doors and we followed!

I would maybe check into what exact labs they did, and if they sent them out, or what. If you look on the main site here there is something about why it matters about going to a reliable lab. Not that Tuality isn't reliable, but I don't know how well they do things for Celiac blood tests is all. We are currently waiting to get Ashlee re-checked because I am afraid she might be getting gluten still and I found out that she will need to get a blood draw locally, then they will send it to California to do the test. You should be able to find out exactly what test they did and where it was done.

That's good they are getting her in on Monday, is that the same Dr. who was going to see her in March? I know I have read people on here say that they tested negatively, but responded to the gluten-free diet and that was enough for them. If she wants to go gluten-free now, are you OK with that? I am glad we have a diagnosis for Ashlee, but mainly becuase she was 4-1/2 when she was diagnosed. I have read that sometimes kids go through a period in their teens when the symptoms don't appear, and this way I have the diagnosis if she forgets what it felt like and begins to wonder. Chelsea is old enough that if she were to go gluten free and it worked she would never want to ingest gluten again! I would still want to check things out so that you don't miss something else, but when the Dr.s don't seem to be helping, what do you do?

So was she thinking she had just eaten Biscuits and gravy when she really hadn't? That sounds scary! The seizures sound scary too!

I know people talk about being gluten intollerant vs. having Celiac Disease. I really don't understand the difference. I do know that Enterolab only will diagnose as being gluten intollerant, I really don't know why though. People say they are very helpful, and I think they are based somewhere down here in Texas. It is a stool test that they send you in the mail and you send it back. They go off of that to detect gluten intollerance, as well as other food intollerances. I looked into it a little while trying to figure out what is going on with my son. Maybe I am too keyed into poop these days, but some food seems to be bothering him! The testing was out of our price range though (1st year teacher!) so I am just trying to watch him. His symptoms are nothing compared to Chelsea though!

Michelle

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Maybe I wasn't really clear. Her grandmother is here visiting from Oregon. While I was at the hospital with my husband (he had surgery yesterday! Life is so exciting at our house! :unsure: ) she really did fix Chelsea Biscuits and Gravy. Not that we were trying to avoid gluten or anything, but all the stuff yesterday that she ate yesterday was heavy amts of gluten. She got something she's paying for.

Chelsea was very sick when younger, too. She had her first infection at 5 weeks and was hospitalized. Was sick constantly until 7 1/2 mos. Had tubes in her ears at 4 months because she couldn't get over the ear infections. From 4-8 months she only gained 1/2 lb....weighing 13 1/2 lbs at 8 months old...this to say issues have been ongoing all her life. Ear infections, sinus infections, etc.

Then as a teenager seizures, rashes, nausea, vomiting, headaches, now constant migraines. :angry:

Feeling really lost! I had heard that Dallas has Drs. with knowledge about Celiac's...wondering now after talking to this other Drs. office(by the way at the office of the Dr. taht did her last biopsy) and they say the blood tests done at that time were neg. The blood tests done at hospital when Chelsea was admitted Jan. 21st shows Antinuclear antibodies saying she has an atuimmund disease (which there is a lot of on both mine and my husband's family, although we ourselves are healthy). So, the Rheumatologist we saw Wednesday ran more tests and said he thinks it's Celiac's due to her symptoms. He says she doesn't have Lupus or one of the other diseases her treats and sent us back to a gastro....UGH!!!! :unsure:

so frustrated!!! She's so sick!

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