Update To Meeting With Doc

[strawberrygm]

Remember I posted that I was so mad I could spit gluten free nails b/c the ped gastro wouldnt sign off on dd's paperwork so that we could get financial help with her gluten free foods?

We met with him last Wednesday.

I didn't realize this until then, but he apparantly is an all by the book very clinical type person.

She has all the signs and symptoms for celiac. Her bloodwork pointed to it. There was some damage on the biopsy. And she has had a great response to going gluten free.

But here's the deal = there wasnt HORRIBLE damage to her villi. So, he wont offically diagnose her on paper as Celiac unless there was HORRIBLE damage.

He did provide me with a letter for the caseworker that stated that she has symptoms associated with Celiac and has had a great response to the gluten free diet.

He told me about another patient of his who is 19yrs old and has spent many years under his care, trying so hard to find a diagnosis for her pain and problems, was always in the hospital or ER , refused pain meds so you know she wasnt a drugseeker, but they never could find a problem. She researched and thought maybe it was Celiac, so she emailed doc to see if she had been checked and she had. She tried the gluten-free diet and is healthier than she has ever been in her whole life. Yet he still can't diagnose her.

He wants to challenge Lacee with gluten this summer when she is out of school. Lacee and I are both so torn about this, as yes we would love for her not to be Celiac or gluten intolerant and be able to eat like her friends, but the thought of her getting sick again is paralyzing. She is 10, we talked about what he had said on the way home. She said that if we did try gluten this summer that she was only going to do it for a couple days and as soon as she started getting "THAT PAIN" as she called it back she was done!

[Rondar2001]

Have you tried to get a second opinion. From the sounds of this doctor, I would probably look into it.

[strawberrygm]

No, I havent yet.

I am torn on whether I should or not.

I really like this doc as far as being super careful and taking his time with us, not rushing through a visit, explaining everything in great detail, etc etc.

BUT, I am concerned about this as it seems to me she has enough for the diagnosis. And ESPECIALLY the 19yr old girl he told me about!!

[ShayFL]

It really is hard for me to read things like this. One of my doctors who was so "nice" and so "caring" and spent "lots of time with me" nearly killed me 20 years ago by Rxing the wrong meds. This same doctor that I had for 9 years, when he said I needed surgery on my cervix, and I said I was going for a second opinion, threw my chart across the room, yelled at me and slammed the door on me. So I no longer "revere" doctors in anyway. I now "fire" doctor's who act like that. I do not tolerate ego or arrogance anymore. No way!! "I" am my first priority and I dont give a rats behind about a doctor's feelings anymore. If it doesnt feel right, Im not doing it. Period.

Doctor's make MISTAKES everyday!! Please do not put your daughter's health in the hands of this one man. Please dont to that.

Second opinion.

[strawberrygm]

Where would I go?

We live in West TN. The ped gastro she sees is at Vanderbilt Childrens in Nashville. 2 hours away.

There is another Childrens Hospital 2 hours in the other direction -- Lebhoneur.

Anyone know any good celiac docs in TN??

[Fiddle-Faddle]

I think you should post a separate thread on this board, asking if anyone within 200 miles of you can recommend a doctor who is familiar with celiac.

Your doctor obviously is not--he is only diagnosing it in its extreme end stage. That's like not diagnosing someone with a peanut allergy until they have a severe anaphylactic reaction, instead of diagnosing them at the first sign of hives, or swollen lips, or vomiting. Ridiculous.

Lacee has antibodies to gluten and villi damage--that is celiac. To my knowledge (someone correct me if I'm wrong), there is NOTHING else that can cause both. To not diagnose it because the damage isn't severe enough is like not saying you're pregnant until the baby is crowning.

If you do a search on this board, there is someone ("TCA") who posted a thread a couple of years ago called "Megan's gagging isn't getting any better." See if you can pm her or contact her somehow, as her daughter had heart surgery at Vanderbilt. She went through heck with the doctors, as they didn't initially believe that her baby was reacting to gluten via breastmilk. But the mother took amazingly careful notes, made charts of diet and symptoms, and PROVED to the doctors that the gluten was what she was reacting to. They finally did believe her.

I'm sure Lacee is wishing that somehow, she doesn't really have celiac, but wishful thinking can get you into trouble.

Imagine next summer--her intestines will have healed. If you do a gluten challenge, she might have severe reactions. Or she might not. She might have no reaction whatsoever--at first. It takes a while to damage the intestines, you know.

This is why, 30 years ago, they used to think that children "outgrew" celiac, the way that some allergies are outgrown. (You probably know by now that celiac is not an allergy, but an autoimmune disorder, right?) But those children who seemed able to eat gluten again with no problems DID go on to develop severe problems, including lupus, rheumatoid arthritis, thyroid disorders, diabetes, fibromyalgia, IBS (which we all know is often celiac misdiagnosed), and possibly intestinal lymphoma.

I know how hard it seems at first, but there are geniuses out there who have come up with gluten-free recipes for EVERYTHING, and they do taste just like the gluteny originals. Right now, most of the premade gluten-free stuff you see at the store tastes like styrofoam, but you can special-order gluten-free breads, rolls, muffins, bagels, cakes, cookies, pizza crusts, whatever, that taste really, really good.

And most of the recipes are EASIER than gluteny recipes, because there is no gluten that needs to rest, or be kneaded, etc. Mix, dump, bake, you're done--and it all tastes great.

Please keep researching everything, hang in there, and get a better doctor!!!!

[strawberrygm]

Thank you all so very much for your advice and help!!

I hate not knowing what is going on with my kids. I was not impressed with Lebonheur when Lacee was 1 with sleep apnea, I was not impressed with them taking 3 tries to get a negative result on her at age 3 for cystic fibrosis, and I was not impressed with them this summer with Mark Anthony and his tonsil/adenoid and ear tube surgery.

This is the first time I have ever felt a need to question Vanderbilt, but you are all right, I have to put my kids first. Just because he has good bedside manners, or seems to be a great person, does not mean a doc can not make a mistake (intentional or not).

I so dont want her to get sick again. I want to be on the road to healing and a better life for her.

I am now spazzing myself out, thinking well if its not celiac, then what is it? Is it worse?

I appreciate you all so much!!!

[kbtoyssni]

You may be able to find a good GP who will diagnose celiac. Maybe call some in the area and ask if they know about celiac. I tend to go for younger doctors because they're a little more current on the issue.

[strawberrygm]

Her ped has diagnosed her with celiac.

This is the same ped that has told me that if I would like to try my 1yr old on the gluten free diet before having ANY testing done and he has a positive response she will go ahead and diagnose him.

I am trying to get a diagnosis from the pediatric gastrointerologist specialist at Vanderbilt Childrens Hospital for my daughters caseworker, since he is the one that performed the biopsy.

HEY- do ya'll think I should get her ped to order "the poop test"??

[Lisa]

Where would I go?

We live in West TN. The ped gastro she sees is at Vanderbilt Childrens in Nashville. 2 hours away.

There is another Childrens Hospital 2 hours in the other direction -- Lebhoneur.

Anyone know any good celiac docs in TN??

FIND A NEW DOCTOR!!! I said that loud so you could hear me in Tennessee. Are you near Memphis? Please PM me and I will give you some contacts.

Here are some contacts in Tennessee. They can direct you to where you need to be:

Open Original Shared Link

[taweavmo3]

I agree with Fiddle Faddle, asking you to put your daughter on a gluten challenge is risky. Definately get a second opinion.....you are not betraying this doctor in anyway by doing so, you are being your daughters advocate. Most doctors (ones worth seeing anyway) do not have any problem with a patient getting a second opinion, and should encourage it.

And I too have heard stories about someone's cousin, sibling, etc who "outgrew" Celiac....and twice I have also found out that they died an early death from another disease. That is the tricky thing about Celiac....some have violent reactions, others do not, but have the same damage being done. It can manifest itself in so many different ways, and once that auto-immune trigger is pulled, you can't undo it. My son has Psoriasis, which I believe is how gluten sensitivity manifests in his body. I have one daughter who tested positive after being very,very sick, and she has the typical reactions. I've kept the younger kids on the diet for prevention, I'm just not taking chances with their immune systems at this young of an age. They can eat how they want when they are older, but at least I'll know I gave them a healthy start and knowledge about the diet that will last them a lifetime should they decide to stay gluten free.

Sorry to ramble....it just frustrates me to see doctors taking such a gamble like that. Being conservative has it's place in the medical field, but this is not it. The focus should be on getting her better as soon as possible, not playing the waiting game until she's sick enough for a diagnosis. Just my humble opinion of course, lol. I get a little carried away after going through one too many "conservative" docs before getting our diagnosis.

Good luck with everything, whatever you decide!

[Fiddle-Faddle]

If the ped diagnosed her, you HAVE your diagnosis!!!! You don't need anything else!

BTW, my children are all gluten-free. None of them have been tested. Two of them are no-brainers, based on consistent symptoms that are GONE on a gluten-free diet. The third is iffy, but we figured, a gluten-free diet is NOT going to hurt her in any way, shape, or form. They don't cheat, because they know I will make them a gluten-free version of whatever they feel they are missing.

Even their friends' parents tell me (with awe) that my kids don't cheat.

If a 7-year-old can understand the importance of a gluten-free diet, why can't your stupid doctor???!!!

Sorry.

Rant over!

[strawberrygm]

No need to apologize for rants. We all have them. Experience is what makes you all so important to those of us just beginning on this journey.

The reason I need the diagnosis from the doc at vandy is b/c we are eligible for financial support with her gluten free foods. But the caseworker needs the diagnosis from vandy since they are the ones that performed the tests and are the specialists.

[ShayFL]

Then let a "financial" battle be one thing and your daughter's health another. SHE IS CELIAC. No need to EVER doubt that. She needs to be gluten-free for life!! To avoid things like T1 Diabetes, lymphoma and other autoimmune diseases. You can help her have a life of good health by keeping her gluten-free now and stressing the importance of it for live. Educate her and feed her gluten-free.

If you find yourself doubting because of one doctor who clearly hasnt a clue (and I dont care what his credentials are), then you will be doing your girl a complete disservice to her health by EVER feeding her gluten.

[strawberrygm]

I just sent emails to several of the closest listings.

Thank you so much for your help!

FIND A NEW DOCTOR!!! I said that loud so you could hear me in Tennessee. Are you near Memphis? Please PM me and I will give you some contacts.

Here are some contacts in Tennessee. They can direct you to where you need to be:

Open Original Shared Link

[strawberrygm]

I had no luck with my search for that post or that poster. Anyone???

I think you should post a separate thread on this board, asking if anyone within 200 miles of you can recommend a doctor who is familiar with celiac.

Your doctor obviously is not--he is only diagnosing it in its extreme end stage. That's like not diagnosing someone with a peanut allergy until they have a severe anaphylactic reaction, instead of diagnosing them at the first sign of hives, or swollen lips, or vomiting. Ridiculous.

Lacee has antibodies to gluten and villi damage--that is celiac. To my knowledge (someone correct me if I'm wrong), there is NOTHING else that can cause both. To not diagnose it because the damage isn't severe enough is like not saying you're pregnant until the baby is crowning.

If you do a search on this board, there is someone ("TCA") who posted a thread a couple of years ago called "Megan's gagging isn't getting any better." See if you can pm her or contact her somehow, as her daughter had heart surgery at Vanderbilt. She went through heck with the doctors, as they didn't initially believe that her baby was reacting to gluten via breastmilk. But the mother took amazingly careful notes, made charts of diet and symptoms, and PROVED to the doctors that the gluten was what she was reacting to. They finally did believe her.

I'm sure Lacee is wishing that somehow, she doesn't really have celiac, but wishful thinking can get you into trouble.

Imagine next summer--her intestines will have healed. If you do a gluten challenge, she might have severe reactions. Or she might not. She might have no reaction whatsoever--at first. It takes a while to damage the intestines, you know.

This is why, 30 years ago, they used to think that children "outgrew" celiac, the way that some allergies are outgrown. (You probably know by now that celiac is not an allergy, but an autoimmune disorder, right?) But those children who seemed able to eat gluten again with no problems DID go on to develop severe problems, including lupus, rheumatoid arthritis, thyroid disorders, diabetes, fibromyalgia, IBS (which we all know is often celiac misdiagnosed), and possibly intestinal lymphoma.

I know how hard it seems at first, but there are geniuses out there who have come up with gluten-free recipes for EVERYTHING, and they do taste just like the gluteny originals. Right now, most of the premade gluten-free stuff you see at the store tastes like styrofoam, but you can special-order gluten-free breads, rolls, muffins, bagels, cakes, cookies, pizza crusts, whatever, that taste really, really good.

And most of the recipes are EASIER than gluteny recipes, because there is no gluten that needs to rest, or be kneaded, etc. Mix, dump, bake, you're done--and it all tastes great.

Please keep researching everything, hang in there, and get a better doctor!!!!

[Darn210]

I had no luck with my search for that post or that poster. Anyone???

Open Original Shared Link

This is the thread that Fiddle-Faddle was referring to . . . I didn't read it for relevence . . . I figure you will

[Fiddle-Faddle]

The reason I need the diagnosis from the doc at vandy is b/c we are eligible for financial support with her gluten free foods.

Honestly, I wouldn't bother with the financial support.

In the first place, it's the pre-made breads, cakes, and cookies that are ridiculously expensive--but none of them are great, and most of them are downright awful.

It is VERY simple, and way, way less expensive to make your own. The flours are more expensive than gluten flours, but the homemade gluten-free product isn't more expensive than the storebought gluteny equivalent.

There is a flax bread/bun recipe that takes 10 minutes to measure/mix, and 16 minutes to bake--you can have fresh, REALLY GOOD, homemade bread on the table in less than 30 minutes. There are amazing recipes on www.betterbatter.com (a great source of gluten-free flour, but you can mix your own more cheaply if you have time and energy and great storage space), and all their bread recipes work great in bread machines. You can also use their flour in a Bisquick-type homemade mix that works great in all Bisquick recipes.

You can use corn tortillas (VERY cheap!) for pizza crusts and wrap sandwiches, homemade cookies and muffins are easy, cheap, and as good as any bakery cookie or muffin, as are homemade cakes and pancakes. The pancake mixes on the market are expensive, but mixing the same flours up in bulk is cheap, and there are several copycat recipes out there that work well, and the pancakes/waffles are delicious.

You can use corn meal instead of bread crumbs in any recipe (add seasonings if it's supposed to be Italian bread crumbs)--works great, and I've NEVER had a complaint from family gluten-eaters. I've done this for meatballs, meatloaf, chicken nuggets, fish sticks, and casserole toppings.

Oh--Costco just started carrying TWO different brands of gluten-free meatballs (but they're not marketed as gluten-free, they just happen to BE gluten-free, so you wouldn't get reimbursed for them).

ANd you won't get reimbursed for buying corn meal, because that is not a special gluten-free item. You'll get reimbursed if you buy expensive gluten-free chicken nuggets for $16 a pound. Time spent dipping chicken tenders in egg and then corn meal: 10 minutes. Baking time is the same for both. Is it really worth buying the premade stuff? And you wouldn't get reimbursed for the entire purchase price, but only a portion, last I checked into it.

I have three kids and work full-time, so I do know how overwhelming it can seem. But it's not NEARLY as time-consuming as I thought it would be. You do have to be organized about it, though.

If you can't find recipes mentioned above (they're all posted on this site somewhere), pm me and I'll repost in the recipe section.

[Fiddle-Faddle]

I jsut wanted to add that the healthiest diet for a newly diagnosed celiac does NOT include gluten-free breads, pastas, cakes, cookies, etc., anyway, just like the healthiest diet for NORMAL people doesn't include them. Those items are not for nutrition, they're for snacks and fun--but the gluten-free versions are difficult to digest for a newly diagnosed celiac whose intestines have not yet fully healed.

[ang1e0251]

I have to add my own results that agree with the above posters. When I eat those prepared foods, I don't react to them but they sit in my gut like a rock. Yesterday I had corn spaghetti, a little too much I guess, got the worst heartburn. Those are occasional treats but I really feel much better and a great sense of well being when I just eat simple foods. I eat meats, rice, potatoes, vegetables & fruits. I can have nuts and nut butters and jams. I can eat the simple peanut butter cookies with no flour and corn tortillas. But I feel the best on these foods. The specialty foods you might get a subsidy for really are hard on me. So if you're not able to afford them or be subsidized for them, maybe it's a blessing in disguise. I hope these comments are helpful to you and I hope your child returns to health.

[strawberrygm]

i do appreciate everyone's comments and advice very much and will continue to keep you updated.

the financial support actually comes pretty nice, they give you a list of foods, you choose what you want and the qty, up to the amount you are allowed. preparing meals at home isnt the hardest part for us, but having things on hand to send for lunches, snacks, and to friends houses, etc. i agree that the meats and veggies are best for all of us. yet i am sure she doesnt always want left overs for lunch, and when she goes to friends houses, sending items (not always, but to newer friends or less careful moms) certainly makes me feel better. its so frustrating dealin with the doctors and the whole system that is supposed to be there to help us but seems to be working against us.