Turning My Mind Around In Knots

[texasblue]

I am writing about my 5 y/o daughter. If you are willing to bear with me here is the long history:

She bad reflux as a baby and into toddlerhood. She didn't tolerate formula at all (gas on regular and projectile vomiting on soy). We exclusively breastfed for 6 months and nursed until 15 months. and she would still spit up like a fountain - it was guaranteed to happen all day and night. The only thing that made any measurable difference was for me to never eat any dairy and of course we never gave her any. She took Zantac for those first few months and I drank gallons of camomile tea to help calm her tummy. She was extremely colicy/fussy until she was about 3 months old and then it was kind of off and on. During all this her Pedi would call her a "happy spitter" because she was never failure to thrive. In fact, she was the opposite - quite a chunker and growing really well. I figured she ate because her tummy hurt and wound up with so much milk that she just spit a lot up. She always got to that great hind milk that is so rich. My thinking is that she had Milk Protein Intolerance, at a minimum, as a baby. When she weaned we went to Goats milk on the advice our pediatrician. She had a bunch of sinus infections and antibiotics when she was younger than 18 months.

By age 2 or so we started letting her have small amounts of lactose free milk and we thought she was doing fine. She was hitting all of her milestones except in speech. She didn't speak more than a handful of words until she was close to 2 1/2. By age three we thought she must have ADHD because she was a ping pong ball. She couldn't sit still to save her life. We were referred to an Occupational Therapist at age 3 and it was determined that she has mild/moderate Sensory Integration Disorder. So, that started 2 years of OT therapy that was actually quite helpful with lots of her behavior and speech issues. She does not have Autism.

By her well child check up at age 4 she was having a lot of nasal allergy type symptoms and she had dropped from being in the 75th or so percentile of height in her first 2 years to now at the 25th percentile. There had been a slow drift down in her percentiles starting at around age 2 1/2 to 3. We noticed she always had a round belly, she had always had foul smelling, frequent loose stools, she had gas all the time, and still had wet burps. I can't remember a day in her life when she was actually constipated or even had a firm stool.

This started a round of visits to the allergist to rule out an allergy (my mother has multiple allergies including wheat and other common foods, as well as severe environmental allergies). Nothing was conclusive but we started her on an allergy med to cover her frequent sinus infections and runny nose. He also suggested we remove lactose completely from her diet again based on her history as an infant. Her skin testing showed negative for wheat, soy and milk a year ago.

At about age 4 3/4 she started to complain of her belly hurting, she began to have even more frequent bowel movements and her pediatrician was finally concerned enough about her height to send us on a GI consult. The GI doc immediately thought Celiac and sent her for lab. It all was normal except that she has low IGA, her IGG Anti Gliadin antibodies were slight elevated and she has the DQ8 gene ( which I also have - all other Celiac lab for me was negative as well). He still recommended a small bowel biopsy and biopsies for sugar metabolism. Nothing came back with any significance. By this time we have become completely frustrated and are beginning to question our decisions to continue to pursue this. The GI doc says he thinks her gut stuff and her height are unrelated and recommends an Endocrinology consult. She is still 25th percentile on height and about 60th percentile on weight. Her bone age scan showed her growth is about 1.5 - 2 years behind her actual age.

We had the endocrine consult and she's holding steady at the 25th percentile for the last year . She says the bone age scan is good news because it means she still has more room to grow and it could just take her longer to get all of her growth in. All other endocrinology labs are normal. We have a height recheck in 3 months and will then see if there is anything worth continue to pursue. We don't care if she is going to be short. We just want to make sure that isis what her body is supposed to do and not that it is an underlying medical issue going on. (There are no truly short people in our family. Everyone is either average or tall. I'm 5'8" and dad is 6'.) The allergist wants nothing to do with the whole issue anymore. The GI doc all but said he thinks there is nothing he can see to treat. He dismisses Enterolab, bacterial overgrowth, or leaky gut issues and says he can't recommend a gluten free diet based on her negative biopsy.

We have now had her casein free for the last six weeks. I've not seen any major changes in her bowels. She still has pale stools (light tan/yellowish) that range from soft formed to completely loose, a moderate to large amount each time. Her belly still hurts right before and during a BM but she doesn't complain at other times. She still "toots" frequently. It is actually rare for her to complain about any kind of pain. She'll go a few days and be fine and then have a few days where she's in the bathroom more often. The only real obvious thing I've seen is that when she gets whole wheat things she seems to have more trouble.

In my mind I've got these choices:

1. Leave things as they are. She is not in so much discomfort that she is unable to do the things she likes to do. Certainly a tempting option and one I would do except that I have a feeling there really is something going on here.

2. Try probiotics to see if it is a bacterial imbalance. A reasonable less invasive option, I think.

3. Go through enterolab to maybe find out if she is gluten intolerant/casein intolerant. This option sounds nice on the surface because it is a more concrete answer, but it seems that Enterolab diagnosis a lot of people as gluten/casein intolerant and they seem to think everybody is.

4. Just do a gluten challenge, but for how long and to what extent and what happens when she asks when she is older why she has to follow this restrictive diet. Not to mention the challenges that are bound to come from every other corner of our lives!

5. Continue to pursue a traditional medicine reason - I'm losing more and more optimism from this option. We've had ZERO help from regular MD's. If it isn't in their medical textbook they dismiss us out of hand. I am feeling like a crazy mother chasing a shadow.

So, after this hugely long post, does anyone have any insight? Thanks for reading this far, if you have.

[Ridgewalker]

Hi, Texasblue. Don't worry about long posts! We don't have insurance companies telling us not to spend more than 5 minutes with someone

My opinion is that you are on the right track. I am a strong believer in our Mother's Instinct. So, of all the options you listed, as tempting as it may be, don't just let things lie as they are. No child should have the stomach problems that your daughter has had. There is a reason for it- the doctors just couldn't figure out what that reason is.

You may be right about the milk protein (casein) intolerance as a baby. But if you were consuming gluten when she was nursing, that came through in your milk and she ingested it as well.

Celiac can cause all of the problems that you've described, including the speech delay. The unfortunate fact is, that the "gold standard" (and I'm starting to hate that phrase) for diagnosing Celiac produces a rather unsatisfactory number of false negatives, especially in children.

My personal opinion is that your option #4 is your best one. This is what I ultimately decided to do for my son. I decided to put him on a gluten-free diet for 3 months, and re-evaluate at that time. While going gluten-free does take some effort (make sure to ask questions and read up on "hidden" gluten and cross contamination) it is well worth it!

As for her asking about it later, well, take it one step at a time. Challenges in the way it affects your daily lives will come, but if you arm yourself with knowledge and prepare as much as possible, it's do-able.

As for what extent she needs to be gluten-free... For a trial diet to do any good, it has to be 100%. That means, you can't just cut out bread and pasta, you have to check the labels on every single thing that goes into her mouth, including all foods, condiments, toothpaste, vitamins and meds, chapstick, etc. Also, if you give her an alternative gluten-free bread, you will need a separate toaster for that. Gluten hides ion microwaves, stoves, countertops, cracks in the kitchen table, and more.

People with gluten intolerance can and will react to the most minute particle. It sounds daunting, but it has to be 100%, or you'll never know if the trial diet was accurate.

If you decide to do this, we can help you! Lots of people here helped me when I first got started back in the spring, and I know that my son's healing would have been slower without their help.

-Sarah

[Darn210]

Texasblue,

I think both options 2 & 4 sound like good possibilities. I can't talk too much about 2, but if she was on a lot of antibiotics when she was younger, there may be something to your theory of a bacterial imbalance. Hopefully, someone who has experience with that will address that option.

We are currently doing a trial gluten-free diet for my son. He has no GI symptoms but his sister has been diagnosed and he is below the 5th percentile (and always has been). We set the length of the trial for 6 months. Granted, this was not a big step for us to take since his sister was already gluten-free. However, the first time around with my daughter, it really didn't take that long to make the adjustments (although we only went gluten-free and not cf, too)

Just make sure that you do your trials independent of each other so that you have a clear-cut result of what helped/fixed the problems.

Also, since you are doing this on your own, keep a journal with height, weight, typical diet, bowel movements (number of and consistency of), etc. It will just help to have it documented if later down the road you end up at the doctor's office and you have proof of how diet or probiotics helped. My daughter's GI (and now my son's) is open to diagnosis through positive results from a gluten free diet - so those doctor's DO exist.

Keep listening to your mother's intuition. Good Luck.

[texasblue]

Ridgewalker and Darn210 thanks for your insights. It seemed so much easier to think of gluten free when we were looking at an actual diagnosis of celiac. Especially since now that we are casein free she is starting to question why she can't have some of her favorite foods. She didn't mind not having the straight dairy/cheese but the casein seems to have hit her harder.

I've been keeping track of her BM's for the last 8 weeks or so. I even took some pictures (gross!) so that if I missed one she could tell me which picture that it looks more like. How long does casein take to get out of her system? We've had just a couple of slip-ups when I missed it in a cookie and in the regular smart balance butter.

When you do a food diary are you writing down absolutely everything?

For the next step I'm thinking of doing the probiotics to start with while we continue with casein free and continuing to document her BM's. How long to know whether that is working?

I know a lot of people on these boards have seemed to have gone gluten free "on their own". My worry is that as she gets older she is going to question why she has to do this. Right now she already tells me that she "feels fine and she doesn't want to see any more doctors!" (Amen to no more doctors!!). However, I don't think she knows any different, really! She has had belly problems since she was born, worse at some times than at others. We will do what is necessary to help her but it sure sounds tempting to do the Enterolab route where there is a piece of paper that gives evidence.

Has anyone had luck with enterolab after doing gluten free for a while? Try gluten free to see if we see a change/difference. Then if it seems that we do see a difference to get back up confirmation with the lab?

Thanks for answering some more questions. Do you ever feel like the lone fish swimming upstream?

[glutenfreegirls]

Another down side to doing nothing is that she may end up with long term health issues from gluten sensitivity or leaky gut. One of the things that motivated me was searching this site and reading the stories of adults who had vague symptoms as children that weren't attended to (because no one knew better then), and hearing all the health issues they have now as adults.

I, too, worry about what to tell my kids about their diet when they are older (they are both enterolab positive, but blood negative). Partly, I figure, by the time they question, there may be better diagnostic methods out there. There is a lot of attention on celiac at the moment, and what is known or thought to be true, may be all different in 10 years.

I would do the gluten challenge (our ped views that as a valid diagnostic tool, as well). If you see a growth spurt, and change in stools and gas (and who knows what else might improve that you never even thought was abnormal), then you can feel good about what you are doing. I didn't rush to "challenge"our first daughter--cross contamintaion at school happened soon enough, and then we knew for sure. Our second daughter has only been gluten-free about 6 weeks. Her improvement is slow and steady, but she still has off days that make me question whether we are on the right path for her.

Also, when my kids ask about food they miss, or want, or others have, I do 2 things. One is I look for a gluten-free substitute. But the second is I often say "It is only food. Your health and how you feel is way more important than eating any one particular food", and they seem to under stand that. Our society puts a lot of emphasis on food, but foods main use is to nourish our bodies. Food is only food.

Good luck!

[crittermom]

Hi Texasblue,

I just wanted to offer you some support and let you know I am thinking of you. Good luck and know that you are not alone!

[NewGFMom]

If you decide to do the gluten challenge, it could take 3 months or more to see much of a difference.

The level of vigilance to do a gluten free diet is really exhausting, but if it is the problem it will probably be worth it. If you're going to do it, I'd strongly suggest getting all the gluten out of your house so you don't have to worry about cross contamination issues. If you stir her food with the "wrong" spoon, she can't eat it. Do you know what I mean?

We weren't seeing a lot of results with my son, until I brought the diet to what I previously considered a whole level of crazy. But, once we really became uber vigilant, that's when the healing started to be incredibly obvious. (Weight gain, growth, increased variety of foods he's willing to eat, and his stomach is starting to FINALLY hurt less). and it's very obvious when we slip up.

It's certainly worth a try. If you like to cook, it shouldn't be that big of a deal.

And I totally agree what you said about Enterolab. They always give positive results for gluten sensitivity, regardless of the health of the individual being checked.

[texasblue]

Thank you for all of your responses. Crittermom, it means a lot that people do read the post and care.

NewGFMom - I am realizing what a huge undertaking this all is. While we are doing the probiotics I'm going to do a lot of research. I do cook so hopefully this will help me out in the long run. I think we're all going to have to do it at home in order to stay sane.

Glutenfreegirls - my 5 y/o is my middle daughter - she has a 7.5 y/o sister and a 2.5 year old sister. my 5 y/o is the only one who has these obvious issues. I guess maybe we'll find out if we all go gluten free who else it helps. Food has been a central part of social structures since the beginning of time, I'm thinking we just need to reorganize what kind of food is "special" and worthy of those significant celebrations

I will do anything to help her but this all feels so daunting.