I Need Help

[JulieMM]

Hi, my daughter is 21 and was diagnosed with celiac, she follows a very strict diet, and we are all aware of cross contamination at home, but it's been a year, or even longer and she's not getting better,the only thing that went away is the diarrea but she can barely eat, because she feels bloated and have a lot of discomfort and nausea after she eats breakfast and has lost a lot of weight, she weights 72 pounds. I've taken her to see different doctors (she has medical) and unfortunately I cannot afford a better health insurance at this time. Her primary health psysician told me today that she can no longer see my daughter anymore, because she can't do anything for her. I am frustraded and very sad and don't know what to do anymore..

[cassP]

your doc couldnt help her anymore???? that would be terribly frustrating...

im surprised- maybe she didnt want to give it any extra thought ??? there's so many areas to question to try and help your daughter! im no doctor- but LOTS of people on here will tell you about further food intolerances some have- like dairy, or soy, or corn, or fructose...

or maybe she has a hiatal hernia? it's very common, and makes you feel like you cant eat very much...

or liver or gall bladder congestion or stones can make you nauseaus after eating....

i sure dont know the answers- but i am sure there are some out there!

others on here will also tell you about SIBO...

our regular medical doctors seem to only be good at ruling out serious issues... maybe you should find a better doctor- and in the meantime, you can probably find some answers here or on the net

good luck!!!!

[cassP]

Hi, my daughter is 21 and was diagnosed with celiac, she follows a very strict diet, and we are all aware of cross contamination at home, but it's been a year, or even longer and she's not getting better,the only thing that went away is the diarrea but she can barely eat, because she feels bloated and have a lot of discomfort and nausea after she eats breakfast and has lost a lot of weight, she weights 72 pounds. I've taken her to see different doctors (she has medical) and unfortunately I cannot afford a better health insurance at this time. Her primary health psysician told me today that she can no longer see my daughter anymore, because she can't do anything for her. I am frustraded and very sad and don't know what to do anymore..

OMG PS- you definitely need to find a better doctor too- because she could have something more serious?? i saw a Mystery Diagnosis the other day- and i dont wanna alarm you- but your daughter IS 72 pounds- you may want to find a specialist who can do a barium swallow test to see the entire digestive tract- to see if everything is working right- and if the anatomy is all ok!

one thing is certain-> your daughter's health is SO important- dont let a doc's cold shoulder get you down- your daughter does not have to feel like this

good luck with everything

[JulieMM]

Hi, I really appreciate your concern, I am going to do some research on those conditions. It's overwhelming, there have been times when my daughter has been rush to the hospital, and the outcome is just the same, doctors tell us that her vital signs are ok and she is going to be discharged, then we go to her doctor, and just tells my daughter that she needs to eat, like if my daughter was had anorexia nervosa, wich she doesn't because she makes a huge effort everyday to eat her breakfast and eat meals that are high in calories but still she doesn't meet the daily calorie intake. It' beed so long and I would like to find a doctor that is willing to take her as a patient and give us financing.

[GFinDC]

Oh yeah new doc time for sure!

Make sure to get your daughters medical records to take to the new doctor too.

There are lots of things that could be going on, but with her weight that low she needs to be under medical care.

There is a doctors area on this forum with doc for different US states recommended. You also could check with your local chapters of the CSA (celiac sprue association) for recomendations.

[MelindaLee]

If her insurance is limiting her seeing a specialist, try checking with one of the local "free clinics". Often there are specialist who will see patients with insuffcient insurance pro bono or at little cost. What state are you in? Are there options for public insurance?

[JulieMM]

Thank you so much..you don't know how much I appreciate your responses...it feels so nice knowing that people care. God bless all of you

[gary'sgirl]

Oh, I am so sorry. You must be having a really hard time, but keep persevering for answers.

Two of my children have had some disturbing things happen and had been in ill health since they were only a couple of weeks old. The doctors just kept saying every thing was fine and that maybe i just needed to do something a little differently. But I knew that some thing was wrong, the things that were going on with them I didn't see happening with any of my friends kids and I would ask around a lot.

I just kept looking for answers and praying (all the while my health was bad too and kept getting worse), finally one day I read about Celiac Disease. Something struck a cord in me and I decided to research it. I had heard the words before, but i had no idea what it was, but sure enough the more I looked into it the more I was sure that this was what was going on with my kid and I.

Sure enough, all my children and I have Celiac.

My kids have continually gotten better, but I have not. I have been gluten free for 11 months now with no improvement and I have gotten a little worse since I think.

I have been reading everything I can find to try and figure out what is going on and I found out about SIBO (which my doctor actually said she thought I had, but didn't make much of it), and I really think that this may be what is causing me to not get well.

While reading about SIBO I found out about the Specific Carbohydrate Diet and after reading a lot about it I really think that it will be what might finally help me to get better. It's a diet that is specifically set up for people who have digestive disorders or other problems like that.

I would encourage you to look into th SCD diet and anything else that might sound like it could help your daughter. And of course keep pursuing finding a doctor that will want to help her - you could even look into natural doctors. Sometime they know more about thing that modern medicine doctors don't really look into or acknowledge.

I'm sorry this is so long I just really feel concern for you and your daughter and I hope that you will find some encouragement and help very soon.

~Sarah

[T.H.]

Oh, I'm so sorry.

What has she been tested for by the doctors so far? And is she bloated and nauseated just after breakfast, or after every food she eats? Does her nausea and bloating get better during the night while she sleeps and rev up again after she eats?

If it's after she eats, I would seriously take a look at what food she is eating for breakfast. Anything from salt on up could cause a problem, either the food or something processed with it, etc... Or...could be a parasitic or bacterial infection that reacts to what she eats in some way.

or other issues it could be - hope they tested for these!

- lactose intolerance or dairy intolerance - common in celiacs

- Another food intolerance or allergy - sometimes a food diary can help discover this. If she is on a very strict diet, with no processed foods so it's easy to tell what she's eating? You might want to check out corn and how to avoid it so you can track it, too, as it's in such basic things that you can get it every day - like iodized salt, and even in a ripening spray on tomatoes, sometimes.

- Dietary fructose malabsorption - this involves many foods (veg, fruit, grains) and you'd need to research to look at a safe diet. It is something that gut conditions, like celiacs, may be able to cause (they are still researching).

And a big one:

- Still getting gluten

---- some people are much more sensitive than others. For example, I just got glutened badly by plain nuts. Most things that are labeled Gluten Free have enough gluten that I am very sick, still. I've had to call every company and make sure that all my food is processed in gluten free facilities or I seem to get sick. My father and brother, with the same condition, can eat foods with no problem that would knock me out flat. Also, a number of whole grains and flours have recently been shown to have contamination with gluten, so even if your daughter is not having anything processed, if she's eating any whole grains or flours, that could be an issue.

----could there be some gluten you're missing? Tea bags sealed with gluten, construction with gluten materials like putty or drywall, that sort of thing?

Wish I could offer more.

Best wishes, and very much hoping you can find the answer for your daughter.

[mommida]

Find a new doctor. She will have to go through more tests, but you need to find out what is wrong. At the very least amount of care she should have been tested for food allergies or put on an elimination diet. It does seem that Celiacs can have more sensitivites to foods.

[sb2178]

And there is refractory celiac disease-- very rare-- but it means that your immune system keeps attacking your intestines even after gluten is removed from the diet.

Have they done follow up bloodwork to check on antibody levels? If they haven't gone down, that's a problem. It should be a bare minimum of what a basic PCP can do.

[JulieMM]

To all of you responding; THANK you soooo much for taking the time to respond. God bless you. I am desperate! My biggest issue right now is the lack of health insurance, and I am between jobs, so I can't afford to get her private health insurance, and we found one that is was less than $200 a per month, but she was denied because of her condition. Does anyone know a doctor that would see my daughter and gives me financing? ((

[cassP]

To all of you responding; THANK you soooo much for taking the time to respond. God bless you. I am desperate! My biggest issue right now is the lack of health insurance, and I am between jobs, so I can't afford to get her private health insurance, and we found one that is was less than $200 a per month, but she was denied because of her condition. Does anyone know a doctor that would see my daughter and gives me financing? ((

i thought that they could not deny you anymore for pre-conditions??? im no expert on the Pseudo HCR bill that passed- but i thought that was ONE of the few things in it ???? and idk- if the situation in your family is pretty severe- you may just want to get all the testing done, and get on a payment plan?? sometimes it's just worth it you know?

[ryebaby0]

They can't deny you health insurance, but that's not the same thing as 1. providing it at a price you can afford or 2. getting free medical care when you have no insurance at all, unless it's life-threatening (like arterial bleeding!!)

My son was dx w/ celiac and did not improve; he also has something called autoimmune enteropathy. His gi system is being attacked by his immune system, and he requires meds to control that. He was diagnosed at Children's PGH and Johns Hopkins but AE is very, very rare.

I would contact social services for your county, or a patient advocate office at the closest major hospital. Be polite, but firm, because this is serious. Find someone who understands that. If that isn't working, try a local church, and see if they can hook you up with services/people/information.

In the meantime, find a simple diet she reacts least to: my son lived on nothing but rice and olive oil for about 3 weeks, then rice/oil/chicken for two more, then rice/oil/chicken/spinach...you get the idea.

Your doctor, by the way, is an idiot. What part of the country are you in?

[Skylark]

Ideally she would get care from a better doctor. It's possible to have both celiac and SIBO or Crohn's and refractory celiac has been mentioned. I've seen people around here mention being treated with a course of steroids when malabsorption is this severe.

Is she eating dairy or oats? Some celiacs react to them as if they were gluten. Also, take her off ALL "gluten free" breads and cereals as they can have traces of gluten. Ideally, she should stop eating all packaged and processed foods for a while and stick to home-cooked whole foods.

Rye baby's suggestion of an elimination diet is a good one if the two of you have the patience. At least it's something to try while you're chasing down insurance. Start on white rice and a little plain turkey you cook yourself (lamb is better as few people are allergic to it, but it's expensive) and see what happens. If her stomach settles, start adding foods back one at a time. First to try is pears. If she reacts to those she may have fructose malabsorption. If not, she's likely got a food allergy or intolerance along with the celiac. You can pick up what the reactions are to by adding a new food once a week.

If she can't settle down on white rice and turkey, try her on the Specific Carbohydrate Diet. Open Original Shared Link It's helpful for SIBO and IBS.

[tarnalberry]

i thought that they could not deny you anymore for pre-conditions??? im no expert on the Pseudo HCR bill that passed- but i thought that was ONE of the few things in it ???? and idk- if the situation in your family is pretty severe- you may just want to get all the testing done, and get on a payment plan?? sometimes it's just worth it you know?

That particular portion of the health reform bill doesn't go into effect for a few years.

[Bigbread]

This is a bit of a late response but my best advice would be contact your local/ countries celiac disease centre/ organization and ask for a list of doctors that treat this. A lot of times they keep information from patients on doctors that was good at treating their illness.

Next stop contact universities/ see if one in your area has a celiac centre/ I noticed some in the US have. Maybe they can advice on who to see or be able to treat your daughter sometimes they have training clinics with specialist doctors teaching.

[lsmly9]

Hi, my daughter is 21 and was diagnosed with celiac, she follows a very strict diet, and we are all aware of cross contamination at home, but it's been a year, or even longer and she's not getting better,the only thing that went away is the diarrea but she can barely eat, because she feels bloated and have a lot of discomfort and nausea after she eats breakfast and has lost a lot of weight, she weights 72 pounds. I've taken her to see different doctors (she has medical) and unfortunately I cannot afford a better health insurance at this time. Her primary health psysician told me today that she can no longer see my daughter anymore, because she can't do anything for her. I am frustraded and very sad and don't know what to do anymore..

Well that is purely frustrating! Has her primary given her a referral to a gastroenterologist? If not, I would specifically request one ASAP. I'm so sorry to hear this, I wish you and your daughter the best of luck.