Yet Another Doctor's Opinion

[IrishHeart]

I told you my thoughts in our PM exchange.

Constipation is often resolved with 2 BIG glasses of WATER every morning and a probiotic every day. Culturelle works well.

Just try it, Please??

If Jordan becomes very ill and uncontrollable emotionally because of her resumption of gluten, I wonder how long you all will be able to stand if before she makes the connection herself and says "Mom, you are right!" No gluten for me.

I wish you luck, hon.

[domesticactivist]

Good advice from IrishHeart. I also want to add what about just laying on the love for a while? I'm sure you already do show her love and sympathy for her pain, and I imagine you must be exhausted emotionally by all this, but with going back on an unrestricted, gluten diet it's good timing to forget the struggles and just show acceptance and compassion.

My son seems to need this in spades. He's been gluten-free for over a year and gaps since feb and is doing much better and is very good about sticking with it. But he still wishes he didn't have to and doesn't like feeling different. It wears me out, truthfully, but when I can be very accepting about it that helps him.

I'm doing a gluten challenge right now after a year gluten-free and most of that on gaps and I find that my perception of how I've felt along this journey is very warped. I've been blogging it and going back and reading about my symptoms gives me a better grasp on reality. I tend to think however I feel is how I always feel. My partner tells a different story. I was pegged as a hypochondriac most of my life and that plays into it, I think. It's hard for me to take myself seriously when it comes to rating symptoms. My partner does better at telling what's up with me than I do. She says her nose doesn't lie, lol. She also has to put up with my moods.

Maybe your daughter is in a similar boat.

I don't know what your diet struggles with her have been in the past but it seems to me she is at an age where she might be ready to take some of that burden of keeping her diet right off your shoulders. I know with my daughter food an control had been a big issue until she agreed to try gaps and we got a few weeks into it. Her relationship with food and with us regarding it has totally changed. Can you come to an agreement with her until after the scope to lay off worrying about food, an then to decide with her what course of action she wants to try once the results are back!

She may make some decisions that surprise you. If she makes a bad decision for her gut she'll be the one to feel the pain and in the end that may guide her to better choices in the end. My kids have made good decisions fir the most part but do count on us to make sure they stick with it. Even in moments of struggle they know the reasons so the fight is not a battle of wills so much as an emotional release.

Do you read family feeding dynamics or the fat nutritionist? I like the approach on both these sites.

[researchmomma]

I told you my thoughts in our PM exchange.

Constipation is often resolved with 2 BIG glasses of WATER every morning and a probiotic every day. Culturelle works well.

Just try it, Please??

If Jordan becomes very ill and uncontrollable emotionally because of her resumption of gluten, I wonder how long you all will be able to stand if before she makes the connection herself and says "Mom, you are right!" No gluten for me.

I wish you luck, hon.

Hey, before I read your post I just had the water talk with her. Yes, she is taking Culterelle but I did forget it last night. Yesterday was a mess.

Thanks Domestic for your advice. When she is on gluten we are down to 400 calories per day and at 70lbs and 12 years old, she can't afford that. I will try to let her make her own choices perhaps but her daily pain effects our family in profound and significant ways. Our house has been peaceful but that ended last night after a gluten filled dinner (not sure it is direct but wow) so we will see where this takes us.

[domesticactivist]

Hey, before I read your post I just had the water talk with her. Yes, she is taking Culterelle but I did forget it last night. Yesterday was a mess.

Thanks Domestic for your advice. When she is on gluten we are down to 400 calories per day and at 70lbs and 12 years old, she can't afford that. I will try to let her make her own choices perhaps but her daily pain effects our family in profound and significant ways. Our house has been peaceful but that ended last night after a gluten filled dinner (not sure it is direct but wow) so we will see where this takes us.

Your daughter has some weight on mine! She'll be 13 in April and is only 57 lbs. I bet your dd is a bit taller, though.

400 calories a day does sound alarming (and we have been there, too)... How much does she eating when gluten-free?

I'm doing a gluten challenge and it makes me feel like crap and not want to eat, too. Though I think it sounds worse for your daughter. My symptoms are not as severe as many people's. When I don't eat other stuff I find myself passing out. To prevent this, I try to eat all my gluten at once, and really fast, either first thing in the morning or right before bed. This wouldn't work if I was a puker, since it would all come right back up. My troubles seem to be more on the other end, though, so if I can get it down before I really feel what I'm doing to myself that helps. I do wake up feeling especially sick after eating it at night, but by 11 AM or so I can usually eat something else. If I eat it in the morning I can usually manage to eat something when the rest of the family is eating supper. Snacks like apples seem to work for me even when I have the upset tummy from the gluten. It's hard to have an appetite for anything more substantial. I've also thought about getting Bob's Red Mill Vital Wheat Gluten and drinking it in a glass of water or sprinkling it on other food all day long. I'm afraid that will put me off the foods I sprinkle it on, though, so I haven't tried that yet.

My daughter was very low calorie at my house before we changed our diet, but happy to gorge on sugar. I'm copy pasting this out of an article I wrote:

She never even made it onto the growth chart. She would eat extremely small portions of foods. Even with foods she normally would eat, she

[domesticactivist]

As for the emotional stuff and the moods, I feel you there. We get the same thing from our kids... and from me, I'm sorry to say. It's good to blame gluten rather than the person, though. "I blame gluten" has become a joke in our house!

[IrishHeart]

I know your children have various issues at play here and I have offered my two or three cents but at some point, I have to wonder--how much are they using food to manipulate you guys? Do you cave in because you are understandably exhausted from fighting with them about it and you want them to be happy?? It must be very tiring for you!

I did this when I was a child when I was about 7-8 years old. I did not like most foods. I hated veggies (which is crazy because now, I LOVE them) and I wanted something else, not what they were all eating. My Mom refused to give in to those demands. I was good at whining and pouting, but she would not bend.

I had headaches, tummy aches, a poor appetite. As a Babe, I was up half the night, my Dad trying to sing and rock me to sleep but I was wide awake. (OMG--I had insomnia even back then )

I would sit with my plate in front of me: some of the meat gone, a few sips of milk gone...potato and green beans or whatever...still there, cold and lumpy.....Mom, dad, sister and bro---all done eating, dishes done and put away, lights out and they were watching TV.

My sweet dad would come back into the kitchen and beg me to eat. Nope. I adored my Dad, but even he could not get me to budge. Finally, one day he said to me, "Baby, either you eat or you don't. But you will be hungry because that's what we are serving for dinner and your Mom is not running a diner. If you are hungry, you have to eat your supper." (Mom worked full time, too out of necessity)

In a few weeks time, maybe because I felt left out sitting there and not having my cookies and watching TV?? --- I started eating the foods that were placed in front of me.

He may have stopped an eating disorder right then in it's beginning stages. He certainly taught me a lesson about not yanking my mother's chain. He was backing her 100% on this --and I was most definitely able to sweet talk my Daddy to favor me. But not on this!! And I eventually put on weight and was a reasonably healthy kid and teenager.

My 20's are another story.

Just sayin...sometimes it's not just about food intolerances, but merely a battle of wills, but really....who knows best and who's in charge??

Mama!! Hang tough.

[researchmomma]

I know your children have various issues at play here and I have offered my two or three cents but at some point, I have to wonder--how much are they using food to manipulate you guys? Do you cave in because you are understandably exhausted from fighting with them about it and you want them to be happy?? It must be very tiring for you!

I did this when I was a child when I was about 7-8 years old. I did not like most foods. I hated veggies (which is crazy because now, I LOVE them) and I wanted something else, not what they were all eating. My Mom refused to give in to those demands. I was good at whining and pouting, but she would not bend.

I would sit with my plate in front of me: some of the meat gone, a few sips of milk gone...potato and green beans or whatever...still there, cold and lumpy.....Mom, dad, sister and bro---all done eating, dishes done and put away, lights out and they were watching TV.

My sweet dad would come back into the kitchen and beg me to eat. Nope. I adored my Dad, but even he could not get me to budge. Finally, one day he said to me, "Baby, either you eat or you don't. But you will be hungry because that's what we are serving for dinner and your Mom is not running a diner. If you are hungry, you have to eat your supper." (Mom worked full time, too out of necessity)

In a few weeks time, maybe because I felt left out sitting there and not having my cookies and watching TV?? --- I started eating the foods that were placed in front of me.

He may have stopped an eating disorder right then in it's beginning stages. He certainly taught me a lesson about not yanking my mother's chain. He was backing her 100% on this --and I was most definitely able to sweet talk my Daddy to favor me. But not on this!! And I eventually put on weight and was a reasonably healthy kid and teenager.

My 20's are another story.

Just sayin...sometimes it's not just about food intolerances, but merely a battle of wills, but really....who knows best and who's in charge??

Mama!! Hang tough.

I have done this but was derailed by her declining weight, delayed puberty, short stature, etc. She has been off and on a great eater. When she is feeling well she eats meats, veggies and starches. She doesn't like junk or processed foods. When she is sick (she physically looks ill), she takes a few bites and is miserable. So it isn't that she is a bad eater or likes crap foods, she seems to be having a tough time physically.

I don't know. I am really close to giving up and giving her the prilosec. She can be on that until she goes away to college and then she can deal with it in her 20s. As long as she physically thrives under my care, I guess I should worry how she got there.

It is all just too much to figure out on my own. Maybe I should just put her health in the hands of the doctors since they have done such a damn stellar job of helping us out until now. She is on seizure meds even though she has a normal EEG between seizures, asthma meds, eczema meds, miralax nightly, culterelle, etc. Good Lord.

[domesticactivist]

I've never been one to let whining and pouting influence my decisions about anything, let alone what to feed the kids. Part of our problem was that things were different at their dad's house. Without the united approach to offering healthy foods she had the ability to hold out for the stuff she was addicted to. The resultant mood swings, blood sugar hell, etc was really miserable for all of us to deal with, but didn't mean she got cookies and tv at my house instead of dinner, anyway.

Even in the case of a home where there are only "good" options (and that can be HARD to figure out when food intolerances are at play), if kids are getting out into the world on their own it really comes down to the fact that they need internal motivation to be able to make good choices for themselves.

Treating them as though they are a bit more grown up when deciding how to eat in general is good for that. But on the day-to-day, we treat them like they are a bit less grown up and take an "eat it or wear it" approach. It works because they've already agreed to the general principle that it is what they need to eat. Once you get that part right, they will feel better and have that much more motivation to stick with it.

If they feel sick they feel sick, though. That is different from pouting or whining or throwing a fit. Sometimes it can be hard to tell the difference, but I really try because I know how much it can mess you up never to be believed about how you physically feel.

[IrishHeart]

As I have said repeatedly to the OP, if your child is ill, that is a different story and I was in no way implying you allow them to starve.

Domesticactivist you came late to this discussion that is several weeks old and you may have misinterpreted what I was talking about.

Please do not take offense at my words.

It was just a different view on a similar situation.

The OP has been under constant stress and I was trying to help her ease up a bit. No need to be defensive about your parenting skills. I was not at all telling you what to do. It was meant to be an amusing story about a difficult situation, but clearly it failed.

I backed you both here--I said MAMA knows best!!

And you do not have to tell me what it's like to be misunderstood by doctors--I went through half my life being misunderstood, given drugs that did nothing, and misdiagnosed as I starved to death for 3 years. I had to figure it out myself.

I have offered all I can in this thread and in PMs. I am sorry you are both under such stress.

I have given you what I felt was IMHO my best advice and I hope some of it helped

to

DomesticActivist?? --you came in late to the conversation so you may not know what she and I have already discussed at GREAT LENGTH. In another post today, you mentioned you are under a gluten challenge and may be making you sensitive?? Maybe so, because you are overly-defensive and I'm sorry you feel so bad. Hope you feel better soon.

My heart aches for both you and Jordan and I pray you find an answer. She deserves to be well. You deserve a break from the madness.

Best wishes,IH

[researchmomma]

As I have said repeatedly to the OP, if your child is ill, that is a different story and I was in no way implying you allow them to starve.

Domesticactivist you came late to this discussion that is several weeks old and you may have misinterpreted what I was talking about.

Please do not take offense at my words.

It was just a different view on a similar situation.

The OP has been under constant stress and I was trying to help her ease up a bit. No need to be defensive about your parenting skills. I was not at all telling you what to do. It was meant to be an amusing story about a difficult situation, but clearly it failed.

I backed you both here--I said MAMA knows best!!

And you do not have to tell me what it's like to be misunderstood by doctors--I went through half my life being misunderstood, given drugs that did nothing, and misdiagnosed as I starved to death for 3 years. I had to figure it out myself.

I have offered all I can in this thread and in PMs. I am sorry you are both under such stress.

I have given you what I felt was IMHO my best advice and I hope some of it helped

to

DomesticActivist?? --you came in late to the conversation so you may not know what she and I have already discussed at GREAT LENGTH. In another post today, you mentioned you are under a gluten challenge and may be making you sensitive?? Maybe so, because you are overly-defensive and I'm sorry you feel so bad. Hope you feel better soon.

My heart aches for both you and Jordan and I pray you find an answer. She deserves to be well. You deserve a break from the madness.

Best wishes,IH

I am not offended or upset at all. And I appreciate all of your help and advice. I think my post came off wrong because I think your advice not to be manipulated is sound. I am just at a loss.

I know you have battled much more with doctors than I have and thankfully you have answers now. Anyway, thank you to you all.

I really appreciate this forum.

[domesticactivist]

Sorry I came off so defensive. I think you are very smart and right on this one, too. Somehow I managed to take your words that I agree with overall as a (mild) personal attack that I just had to clarify/espouse upon. This gluten challenge has me back in my adolescent brain and feeling low energy gets me on the computer more - seemingly not a great combination. (at least i hope its the gluten and not the way i always am) Just think how much fun I must be to live with right now

[IrishHeart]

I am not offended or upset at all. And I appreciate all of your help and advice. I think my post came off wrong because I think your advice not to be manipulated is sound. I

here is what I meant:

Jordan is in discomfort 30 minutes after eating a Leggo's waffle and syrup.

Miserable after eating gluten and 2 weeks of improvement on a gluten-free diet? then, it's a gluten issue. period.

She needs to make the connection in her head. She ate gluten--she feels like sh-t.

She immediately says "it's the syrup"!!! because she does not want to admit it is the wheat and you told me SHE LOVES LEGGOS!!. (it is gluten-free syrup right?? maple syrup only??

Okay--- NOW have her eat one without syrup if you want to make your point!! (this is all I meant by manipulation--ladies, honest)

I am married to a scientist/chemist. He taught me well. The only way to prove a point is to control the experiment.

No offense intended whatsoever. I have worked with children my entire career. I know how they push buttons. I worked my Mom's myself and when I was sick and had pain in my legs as a kid, she told me I was fine, go play. She feels rotten now because of my DX so late in life. I do not blame her one bit. How was she supposed to know??

PS after my DX, She went gluten-free at 84 and feels great! No more GERD or Prilosec

[researchmomma]

here is what I meant:

Jordan is in discomfort 30 minutes after eating a Leggo's waffle and syrup.

Miserable after eating gluten and 2 weeks of improvement on a gluten-free diet? then, it's a gluten issue. period.

She needs to make the connection in her head. She ate gluten--she feels like sh-t.

She immediately says "it's the syrup"!!! because she does not want to admit it is the wheat and you told me SHE LOVES LEGGOS!!. (it is gluten-free syrup right?? maple syrup only??

Okay--- NOW have her eat one without syrup if you want to make your point!! (this is all I meant by manipulation--ladies, honest)

I am married to a scientist/chemist. He taught me well. The only way to prove a point is to control the experiment.

No offense intended whatsoever. I have worked with children my entire career. I know how they push buttons. I worked my Mom's myself and when I was sick and had pain in my legs as a kid, she told me I was fine, go play. She feels rotten now because of my DX so late in life. I do not blame her one bit. How was she supposed to know??

PS after my DX, She went gluten-free at 84 and feels great! No more GERD or Prilosec

I will have her eat one without syrup. I think she will come to the conclusion herself anyway though. I am going to have her keep her diary very carefully this week and she may be able to see it that way herself.

BTW, I was gluten-free with her and now back on gluten and I feel off! Nauseas, tired and crampy. Gluten is yuck!

I agree with your controlled experiment since I run clinical trials for a living! That is why adding prilosec seems silly. Her Aunt's GERD resolved so can't we try gluten free first for two months? You would think any doc would be all over such a reasonable approach. But NOPE.

hahahaha

Back to work. Thank you Ladies!

[Gemini]

I will have her eat one without syrup. I think she will come to the conclusion herself anyway though. I am going to have her keep her diary very carefully this week and she may be able to see it that way herself.

BTW, I was gluten-free with her and now back on gluten and I feel off! Nauseas, tired and crampy. Gluten is yuck!

I agree with your controlled experiment since I run clinical trials for a living! That is why adding prilosec seems silly. Her Aunt's GERD resolved so can't we try gluten free first for two months? You would think any doc would be all over such a reasonable approach. But NOPE.

hahahaha

Back to work. Thank you Ladies!

I know this conversation has been going on awhile but I had to add my 2 cents worth here. Listen to Irishheart! It blows my mind that doctors are willing to put children on Prilosec, never mind adults. That is just really bad medicine....the Band-Aid approach and it never works. I went to doctors for years trying to find out why eating some foods created excruciating pain in my gut and this is what they tried to do to me. I stopped going to doctors altogether and then hit the wall with Celiac at age 46....and developed 3 more autoimmune diseases in the process. Don't let this happen to your daughter....please!

I am small and the shortest one in my family. The clues were there all along. If your daughter takes Prilosec, it will mess up her gut long term. Please keep her gluten-free and accept it will take awhile for results to be seen. Forget the medical profession on this one....they are idiots when it comes to diagnosing Celiac. If it can't be seen on an x-ray or in blood work, they close their already small minds.

I wish you well!

[researchmomma]

I know this conversation has been going on awhile but I had to add my 2 cents worth here. Listen to Irishheart! It blows my mind that doctors are willing to put children on Prilosec, never mind adults. That is just really bad medicine....the Band-Aid approach and it never works. I went to doctors for years trying to find out why eating some foods created excruciating pain in my gut and this is what they tried to do to me. I stopped going to doctors altogether and then hit the wall with Celiac at age 46....and developed 3 more autoimmune diseases in the process. Don't let this happen to your daughter....please!

I am small and the shortest one in my family. The clues were there all along. If your daughter takes Prilosec, it will mess up her gut long term. Please keep her gluten-free and accept it will take awhile for results to be seen. Forget the medical profession on this one....they are idiots when it comes to diagnosing Celiac. If it can't be seen on an x-ray or in blood work, they close their already small minds.

I wish you well!

Thank you for adding your comments. It is helpful. I am really frustrated by the medical profession which has been unprofessional in my opinion.

[IrishHeart]

Thank you for adding your comments. It is helpful. I am really frustrated by the medical profession which has been unprofessional in my opinion.

P.S. Listen to GEMINI-- I know her well & her journey was similar to mine and she is very celiac-savvy and she has researched her brains out, as I have----and she is healthy now ---after many years gluten-free. She and I both were jerked around by the AMA and we saved our own lives.

[researchmomma]

P.S. Listen to GEMINI-- I know her well & her journey was similar to mine and she is very celiac-savvy and she has researched her brains out, as I have----and she is healthy now ---after many years gluten-free. She and I both were jerked around by the AMA and we saved our own lives.

Doesn't it just make you want to scream? Doesn't it make you wonder why doctors don't know more about it?

Our GI tested our daughter only for DQ 2 and 8. She didn't even care about the others that are considered alleles for gluten sensitivity.

That ticks me off. I paid 300 bucks for that test that insurance probably won't cover and I could have paid for a full panel at Enterolab for 369. Which is probably what I will do.

It really is maddening.

Great advice by all.

[IrishHeart]

Just think how much fun I must be to live with right now

No comment. Honestly, if your gluten-challenge is making you feel this out of sorts, maybe you want to cut back on posting for awhile ?? (as you have already apologized in two threads about your "gluten-induced" overly sensitive nature right now.)

I UNDERSTAND!! --and I am not being critical here---as I HAD the same Neuro issues and I was anxious and depressed from gluten. It makes us just plain crazy.

I hope your challenge has given the info you need so you can get the heck off it again. Be well and good luck!

[ravenwoodglass]

P.S. Listen to GEMINI-- I know her well & her journey was similar to mine and she is very celiac-savvy and she has researched her brains out, as I have----and she is healthy now ---after many years gluten-free. She and I both were jerked around by the AMA and we saved our own lives.

As another person who was almost dead before diagnosis I have to agree with IH and G.

[IrishHeart]

As another person who was almost dead before diagnosis I have to agree with IH and G.

Yes, and here is another one who helped me immensely when I first came on here!! Listen to RAVEN -she is a wise woman!!

We all just want to spare J (and you!) from any more misery.

[IrishHeart]

I could have paid for a full panel at Enterolab for 369. Which is probably what I will do.

The gene test for gluten sensitivity was about $180. with tax/handling last I knew....but maybe it went up??

[IrishHeart]

BTW, I was gluten-free with her and now back on gluten and I feel off! Nauseas, tired and crampy. Gluten is yuck!

AHA!!

[ravenwoodglass]

The gene test for gluten sensitivity was about $180. with tax/handling last I knew....but maybe it went up??

I used them 5 years after diagnosis and I think the $369 figure includes the gene test and the stool antibody testing.

[IrishHeart]

I used them 5 years after diagnosis and I think the $369 figure includes the gene test and the stool antibody testing.

I see.... well, that's probably more comprehensive, then.

[nora-n]

I have two DQ1 and I am very gluten sensitive.

Constipation is typical for celiac.

She may get a diagnosis for non-celiac gluten sensitivity at least, which is something different but the doctors might buy it.

Those with other genes rarely have totally flattended villi, but there have been several on this forum with other genes, and also half genes, (one with half gene had increased IEL and got a diagnosis) and several with DQ2,2 with typiclal celiac symptoms

There has been a lot about non-celiac gluten sensitivity on all the latest celiac conferences.

The reason doctors are so strict about diagnosis, is that here in Europe the officially diagnosed patients get free gluten-free food from pharmacies, or get money from the government, so they have to keep it strict. But this sets the standard for the rest of the world too.