Did I Do The Right Thing?

[onelildream]

At the beginning of my pregnancy I was having severe reactions to gluten. (I am now 16 weeks and have been off gluten for 5-6 weeks). I talked to my doctor and he said GO 100% gluten-free the entire pregnancy, and then I'll be sent to a GI doc after I deliver. As I started to do my best and be gluten free my symptoms all ceased, THANK GOODNESS. I was very active in educating myself and have become more and more convinced every day that I have celiac. (my whole life I have had many of the symptoms but just not as severe). Anyway, I have glutened myself on purpose 2 times and refuse to test it again EVER because of the awful repercussions. Very stupid to endanger my growing child, I know, but I am over that.

What I have also done is taken my daughter (2 years old) off of gluten for about 2 weeks now. Her back, which has been covered with "eczema" all of her life, has finally cleared up. She is soft and babylike for once!! And she has had regular stools which she has never had all of her life either (they have always been rock-hard and sometimes she's constipated for a week!). Life w/o Gluten has been great.

Unfortunatly, she found a bag of cheerios in an old diaperbag last week and glutened herself, which of course, gave her constipation for days... And lo-and-behold the rash all over her back came back. It is slowly getting better but I am convinced that this is celiac for us both. I am fine with the lifestyle change, really. I feel good that we feel good. BUT her doctor, when I mentioned celiac at her last visit (before going gluten-free) said he's never had a child test positive for celiac. He even made me feel like I was stupid for questioning it. I mean my daughter has been on a laxative for 2 years!! He blamed me on being the culprit for not giving the laxitive to her regularly.

I'm just wondering... I cannot be tested until after I am pregnant, in which they want me to eat gluten for 12 weeks just to do a stupid biopsy! I cannot survive that! I literally would be 80 pounds. I refuse to even see the GI. But my problem isn't the lifestyle change and strict diet for me, but for my daughter. I am afraid that I did all of this too quickly and prematurely. I didn't tell her doctor, and it seems he'll be angry with me when I tell him she's gluten-free and feeling better. I didn't even get her a blood test before going gluten-free... Now there's no way I am putting her back on gluten. There's no way I'll subject her to a glutening on purpose to get her a DH test. Am I being unreasonable? I don't think so. But I am afraid that "hard evidence" is needed these days. What about when school starts for her and I have to explain how I diagnosed us both with celiac and I want her to be gluten-free. How on earth will things fly with that? And what if she gets mad at me when she's older? Or, gosh, what if I'm insane and we don't have celiac? What if I'm mistaken? I do know going gluten-free has made us both happier and we both are feeling healthier, but I really don't want us to be tested. And I definitly don't want us to go back to gluten. Am I doing the right thing????? or should I buck up and get one of us tested??

[Ursa Major]

In your situation with being pregnant, you did the only reasonable thing. If you would have kept eating gluten you could have lost the baby.

You and your daughter are feeling well now, and that awful rash has gone away. Does your doctor (or her pediatrician, if she has one) know about the rash on her back? It might be enough for him to see that now her eczema is gone, and the constipation has completely disappeared on the gluten-free diet.

If that isn't enough evidence for him, then he is ignorant. In children that young the tests are notoriously unreliable, and the gluten-free diet is the only test that is actually reliable.

My oldest daughter has put herself and her five children (and she is expecting the sixth) on a gluten-free diet with incredible results last year. None of them had any formal testing, and none of them are even tempted to try eating gluten.

My oldest granddaughter is eight, and she told me that she feels sick when she gets glutened and gets diarrhea, and she doesn't like that and does everything she can to avoid gluten. But my daughter homeschools all her kids, so she doesn't have to worry about schools.

When the time comes for your daughter to start school, it should be enough if you get a note from the doctor saying that she is gluten intolerant and needs to avoid all gluten.

If you need to have an official paper stating she is gluten intolerant, you could have her tested by Open Original Shared Link. Even though many doctors in their ignorance won't recognize that as valid (not yet, anyway), it would likely be enough for your daughter when she gets older.

Enterolab will still be accurate for up to a year after going gluten-free, and since it is a stool test (and a cheek swab if you do the gene testing) you can even still do that for yourself!

[Juliebove]

Take your daughter to a gastroenterologist. It's possible he/she could do an endoscopy to check for gluten damage or may even diagnose her based on symptoms.

[shayesmom]

BUT her doctor, when I mentioned celiac at her last visit (before going gluten-free) said he's never had a child test positive for celiac. He even made me feel like I was stupid for questioning it. I mean my daughter has been on a laxative for 2 years!! He blamed me on being the culprit for not giving the laxitive to her regularly.

If your doctor has "never" had a child test positive for celiac than either he's "new", has never ordered the tests, or he is entirely ignorant of the symptoms...or all of the above. Sounds to me like he's the one who is stupid, not you. All those years of formal medical training and an amateur managed to heal a child more effectively than the MD. Hmmm...sounds like sour grapes to me. Personally, I'd be tempted to smack him in the head with his prescription pad for writing prescriptions for constipation without doing a thorough work-up to begin with. If he had followed through instead of matching the first drug to the first symptom, he may have had some sort of knowledge of celiac disease and I'd bet the farm that there would never have been a comment about how he'd "never" seen a child with celiac.

I spend a lot of time on parenting boards and I can't begin to tell you just how many kids are on laxatives, reflux meds, and prescription creams for eczema. It is beyond scary. And one board I go to is hosted by a nationally known pediatrician. The good doctor follows the same mantra. Prescribe for the first (seemingly benign symptom), run more thorough diagnostics when all the drugs fail. It appears that it's the more expedient thing to do. These days, they screen all kids for autism which affects 1 in 150, but Celiac which affects at least 1 in 133 is virtually ignored. I find that strange considering how many autistic kids seem to improve on the diet.

Personally, I applaud your ingenuity. Of course...I did the same thing. And I have a 5 year old who is about to enter kindergarten with no official dx for either of us. We hit some bumps here and there, but overall, we manage just fine. My dd was dx'd by me at the age of 15 months. She doesn't remember life with gluten, but she does know the symptoms an accidentally glutening brings. And she happily stays away. Our doctor wrote up a simple dx of gluten enteropathy for the school and they are respecting that (BTW, gluten enteropathy can be celiac or non-celiac....it doesn't matter as the treatment remains constant).

Don't worry about how your dd will feel about you in the distant future as far as resentment or not having an official dx. Worry about what you can do to keep her healthy and happy now and while she is in your care. Work at coming up with recipes that can replace the ones other kids eat. And in the meantime, encourage her to think for herself and not feel pressured to follow the leader in things. Believe it or not, this situation can be a blessing in disguise. I am constantly amazed at how my dd handles this whole thing. And at the age of 5, I just cannot believe that already she is proving to be a kid who isn't easily influenced by her peers. She is independent and happy. In fact, I think that I'm more hung up on all of this than she is! lol! She has her friends, she's social, inquisitive and she absolutely will NOT eat foods that she is unsure about.

Anyway, keep your chin up and follow your gut instincts on this. If you live your life by following your beliefs, your daughter won't fault you for it. She may not agree with you always, but she'll at least respect you for practicing what you preach. And that kind of example will bolster her own self-esteem and courage to do what she must in the future.

Good luck! Hope all goes well for all of you.

[onelildream]

Thank you. To all of you. I needed the support. I am confident I am doing the right thing. I will present my information at my daughter's next exam and maybe I will teach him a thing or two!! You guys are a God-send. I am happy to have all of your support and love. This forum has been a real blessing in my life.

[gfpaperdoll]

double yes to what shayesmom wrote...

worrying about what you are going to do in the future is just wasted energy - things change everyday & you deal with today what you have to do to be healthy. really, kids that grow up eating a healthy diet are going to want to continue to eat that way.

I would stay away from the doctor as much as possible, a lot of sick people hang out there.

[ShayFL]

I wouldnt worry about your daughter "in the future" either. It is natural for children to go through a rebellious stage in their teens and she may eat gluten to spite you or just to "fit in" with her friends. There is really nothing you will be able to do to stop that. A time comes when we are all responsible for our own choices in life and puberty is when we learn this. Focus on what you CAN do now. You can control what your daughter eats now. And hopefully she will decide for her own that it is the right thing to stay gluten-free later.

[debmom]

I agree with what everyone has written. We never got a positive, definitive diagnosis for my daughter with the gold standard, but all her major symptoms (many, many!) went away on the gluten free diet. One doctor says she has a wheat allergy; another says it's probably celiac but he believes that the vast majority of celiac is not diagnosed with the current tests. A good bit of recent evidence seems to support his theory. Oddly enough, my sister and I, who both had been diagnosed with ulcerative colitis over 30 years ago, also have responded very well to the diet. Our gastroenterologist who by his admission knows little about celiac says that we should keep doing what we are doing because for the first time in 30 years we look free of the disease.

we have had some trouble with the cafeteria at our school, but not much and only due to the changing of personnel. we've just said she has celiac disease and they have adjusted a menu for her. It's very limited, though, so I send some gluten free bars with her.

Good luck--

[RainyZ]

Onelildream, I took my dd off once at 11 months for a couple months and then let her have it again because her ped didn't think it was the reason she wasn't gaining. She got all of her symptoms back and lost more weight, etc. I started a food diary and when I went back to him with it, he agreed that she could have a "malabsorbtion issue" and said to take her off gluten for a couple of weeks to see if there is any change. She is now 18 months. She's only been off of it for a couple of weeks, but it is amazing the difference in my little girl! Even neighbors have noticed she is much more social, happy, active, etc. I will never knowingly give her gluten again. I do not need an "official" diagnosis although I am sure my ped will back me up when he sees the difference. She is gaining as well.

In some ways, I feel fortunate that she has such a strong physical reaction to it. She will be able to make the connection between foods that make her sick and ones that don't. I like what the one poster said about her dd being independent and I think that is awesome. Raise your dd to be a leader and to speak up for herself. One of the ways you can do that is to learn/practice speaking up now and taking a stand on the issue with people. Trust your instincts. I know I will do my best to do so.

You did the right thing. I see no reason to have wheat in anyone's diet. I stopped eating it in support of my daughter and for the first time in many years, my "brain fog" is gone. I have ADHD and am medicated for it, so I always thought it was just part of my ADHD. It wasn't. What a difference it makes!

[slmprofesseur]

You definitely made the right decision. I had many problems with my pregnancy (most likely gluten induced) and my ds was born via c/s at 33 wks. No one should have to leave the hospital without a baby. Additionally, one morning before I went to visit ds in the NICU I had a gallbladder attack. Guess what I ate for breakfast: a banana and some raisin bran.

DS had slow weight gain and reflux, awful stools. He cried a lot. He too had a rash that was unbelievable (The daycare seemed to think it was ringworm)- PM me I can send you a pic. It turned out that he had an allergy to wheat, eggs, and nuts. Of course, I started researching everything. I tried wheat free but gluten free cleared up all of his symptoms and my own.

[taweavmo3]

You are definately not alone in doing this....there are so many parents here in the same boat. I have one child who tested positive, but she was so very,very sick by that time. My other children tested negative, but I ended up putting them all on a gluten free/casein free diet. I have tried in the past to get my pediatrician's support, but one attempt had me in tears, and I haven't tried again.

We have a new ped now, and I bring them in for regular check ups and such....but their diet hasn't come up. They eat better than most kids their age, and are extremely healthy and thriving. The baby, who has been gluten/casein free since she started on solid foods, has not had a single sick visit in two years. That blows me away, and makes me feel like I am doing the right thing.

Like someone else mentioned earlier....my kids very well may rebel at some point and eat nothing but chicken nuggets from McDonald's, lol. But the way I see it, childhood is much too short to spend any of it feeling sick. We get enough of that as adults. So I feel like this is just my way of doing what I can to keep them feeling as good as possible. They will have the tools to maintain this lifestyle, and at the very least, will know how to make healthy food choices. My 9 year old reads labels, can tell you what has good and bad fat, and what vitamins fruits and veggies have. That makes me proud, and certainly does not make me feel like I am "subjecting" my kids to an awful way of life, as my ped suggested.

Oh, and as far as school......so far, they have respected my desire for my non-diagnosed child to be gluten free. The tricky years are the earlier grades, b/c they do so much with food. But as long as I'm willing to bring in the substitutes, and pack a lunch each day (school lunches don't offer much nutrition anyway in my opinion), no one seems to mind.

Gotta run, but good luck to you. You came to the right place!

[slmprofesseur]

You are definately not alone in doing this....there are so many parents here in the same boat. I have one child who tested positive, but she was so very,very sick by that time. My other children tested negative, but I ended up putting them all on a gluten free/casein free diet. I have tried in the past to get my pediatrician's support, but one attempt had me in tears, and I haven't tried again.

We have a new ped now, and I bring them in for regular check ups and such....but their diet hasn't come up. They eat better than most kids their age, and are extremely healthy and thriving. The baby, who has been gluten/casein free since she started on solid foods, has not had a single sick visit in two years. That blows me away, and makes me feel like I am doing the right thing.

Like someone else mentioned earlier....my kids very well may rebel at some point and eat nothing but chicken nuggets from McDonald's, lol. But the way I see it, childhood is much too short to spend any of it feeling sick. We get enough of that as adults. So I feel like this is just my way of doing what I can to keep them feeling as good as possible. They will have the tools to maintain this lifestyle, and at the very least, will know how to make healthy food choices. My 9 year old reads labels, can tell you what has good and bad fat, and what vitamins fruits and veggies have. That makes me proud, and certainly does not make me feel like I am "subjecting" my kids to an awful way of life, as my ped suggested.

My 9 yr old reads labels also! He informs his dad what his little brother can and cannot eat. I pack him a lunch each day also.

Oh, and as far as school......so far, they have respected my desire for my non-diagnosed child to be gluten free. The tricky years are the earlier grades, b/c they do so much with food. But as long as I'm willing to bring in the substitutes, and pack a lunch each day (school lunches don't offer much nutrition anyway in my opinion), no one seems to mind.

Gotta run, but good luck to you. You came to the right place!

[Kibbie]

Are you doing the right thing?? Well any decision that improves your health, your unborn babies health, and your child's health in my opinion is the right decision, no matter what others even Dr.s may say.

As far as going back on gluten after the baby is born that is completely up to you. Some people can accept positive results from a gluten free diet as a positive and leave it at that.... others need "hard proof" the choice is yours.... both answers are okay and correct it just depends on you.

I was a hard proof person with my daughter because I wanted there to be no questions about it later in life.... as for me if/when I start showing symptoms I'll accept a positive response to the diet as Celiac Disease without doing any other testing.

But remember no matter what you choose to do for you and your children.... as long as the choice has the goal to help them be healthier... its the right one

[jparsick84]

The best advice I ever got was "If it hurts, don't do it!"

I was diagnosed DH (just skin biopsy, no internal tests) in Virginia, but when I moved to Florida and tried to find a doctor, they told me that a DH diagnosis doesn't mean I have Celiac (untrue, by the way - if you have DH, you have Celiac disease. DH is a symptom of Celiac disease). They also wanted me to go back on the gluten diet (for 4 months) just so THEY could do a test to make sure.

Knowing that this was absolutely ridiculous I demanded to see another doctor in the practice. This one was much better, and after talking to me for 15 minutes (!) he said that while he would like to do the internal test, he also realized that asking me to make myself sick for 4 months wasn't really an option. Then he said "Well, I wouldn't say you have Celiac, but if it hurts to eat wheat, don't do it."

So if your daughter feels better, then don't make her sick again just so you can get a test to "make sure". It sounds pretty clear to me that you are both doing better on the gluten-free diet. And life is too short to purposely make yourself sick!

[Lockheed]

Fire your pedi! He probably doesn't think that celiac disease is as common and under diagnosed in the population as it is.

I think if the gluten free diet makes you both feel better and look better and your daughter is getting a well balanced diet and good whole grain and fiber substitutions for being gluten free then what does it matter? My husband is not celiac disease and eats gluten free because I do most of the cooking and as much as I love him, I am not going to go all out and prepare two full blown meals and I'm striving to make gluten free a wonderful way of life rather than a life without good food.

Not only that but the celiac disease tests are not entirely reliable. We just don't have the technology and full blown science yet to understand celiac disease. When I was tested my results came back ambiguous (one positive marker one negative marker but irritation noted in the tissue with the colonoscopy and endoscopy and positive food sensitivity for wheat, rye, barley and a hole slew of other stuff). So even if she tests negative, she still might have a sensitivity that wouldn't show up on the blood test. There's so much that's just unknown about food sensitivities, food allergies and the digestive system as a whole.