4

votes

Please hack my son's gluten issue....

Answered on August 19, 2014
Created September 04, 2012 at 10:50 PM

Hello,

When my son went off gluten last fall and then went off it 100% last May, his stomach aches increasingly improved. He still has them a couple times a week regardless. Now when he does have gluten accidentally or tries a little dairy or sweets now, they give him a stomach ache and diarrhea within about 10 minutes.

Today his pediatrician said he should have never gone off grains (because food restrictions always get worse after that ??? ha ha). We forgot to tell her he went off diary too! She also said that my son is not normal as he has lost weight (we think he has stayed steady, but it is only a 3lb dispute) and has only grown 9 cm in two years. She wants him to eat the grains so that her stool tests and tests for celiac, h pylori, IBS etc. will be more accurate.

He is 4 feet ?? and 80 pounds (77lb today) and 14 and two months. He was tested for H pylori and celiac in 2009, both negative. He was on prevacid spring 2010 to spring 2011 for gastritis.

My son was in tears, he doesn???t want to eat grains at all but he wants to grow badly and wants the stomach aches to end. I said if we did it - it would be just for a few days.We go back in 6 weeks to get test results and she wants to put him on prevacid again. He wants to take it. This was our first visit in a year, the last time she told him to drink lots of Boost (he saw the sunflower oil and maltodextrin on the label and never touched it).

So I told him doctors are very useful sometimes, especially helpful in terms of diagnosing (when they have good tests) but that we have other sources of knowledge as well that will treat the whole body and respect his choice to stay off the grains (he is decidedly paleo). I assured him we would combine the best of both approaches.

should he have the gluten for a few days prior to tests?

what are the long term issues with prevacid?

do you think the delayed growth and the tummy issues are connected?

Any ideas?

Thanks a million,

Lisa

26b0f1261d1a0d916825bd0deeb96a21

(5798)

on September 06, 2012
at 09:41 PM

sorry if I was unclear. I was speaking about genetic blood testing for celiac carrier: http://www.uchospitals.edu/pdf/uch_007936.pdf

54578cc6508b657cad1da21cdf76d74e

(149)

on September 06, 2012
at 02:09 PM

Thank you for the great resources. We are in canada so it will not impact insurance or taxes. Non celiac gluten sensistivity looks a lot like him. He is also allergic to yoghurt, not just diary, my only issue with the GAPS is the restriction of starches. But I have a lot more reading to do, thanks again.

94480caec9fbbaacc386d86a45efa720

(1007)

on September 05, 2012
at 12:41 PM

I'm wondering if you mistyped your second sentence? If a patient has been eating gluten-free, the celiac bloodpanel will yield a negative regardless of whether the patient is celiac or not. Even if a patient has been eating gluten continually, the blood tests have a notoriously high false negative rate. The OPs son would have to eat gluten daily for 6 to 8 weeks for "valid" bloodtests (not including the genetic test which is only a risk predictor.) A Valid positive bloodtest could be useful if the son is ever to go live in a dorm in college and needed the DX as proof for the diet.

0d42a3e52e5fe6c4dd7269ce3ab91abb

(55)

on September 05, 2012
at 11:06 AM

he has had testing but it was muscular, can't have chocolate, oats, corn either. He is doing a great job avoiding garbage. we are lucky.

0d42a3e52e5fe6c4dd7269ce3ab91abb

(55)

on September 05, 2012
at 11:03 AM

(Sep 5) Update: thank you all for your kind and useful feedback. We decided that he won't have gluten or crap food but that we will just see her for results of the puberty hand x ray (and to request other tests). We won't want the meds anyway (steriods, prevacid). I have ordered Butter/fermented cod liver, started bone broth, will get raw goats milk and inspect his skin care stuff. He talked to the gal who did his neuromucular food testing last spring and she said to up the safe starches. He went to bed, after a coconut oil/milk fruit smoothie, feeling MUCH more hopeful and relaxed!

0d42a3e52e5fe6c4dd7269ce3ab91abb

(55)

on September 05, 2012
at 10:48 AM

Thank you, I looked up the GAPs diet and we are almost there. Just a few tweaks. He was supposed to be having sauerkraut (cabbage and salt) everyday but summer fun got in the way, we will resume that as well.

0d42a3e52e5fe6c4dd7269ce3ab91abb

(55)

on September 05, 2012
at 10:44 AM

I think you are right, this doctor is a pediatrician but our family doc has seen the great results the rest of the family are having with paleo and is actually not dietary fat phobic, but open to it all. He was relieved to know we don't have to listen to the pediatrician. I agree, no point making yourself sick to get a test result that will prescribe something you don't want to take or confirm you should avoid the thing that makes you sick ha ha. the more we talked about it, the more we realized there is no doubt he feels much better gluten free (and seed oil and dairy free).

F4d04667059bc682540fdfd8b40f13a7

on September 05, 2012
at 02:00 AM

Ahh Lisa, your poor son - that's terrible the doctor wants him to eat grains. Wonder if you could find another doctor who will work with you on this?

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5 Answers

4
43e9d0f324c2fc8b5f283786a1e3bf4f

(419)

on September 04, 2012
at 11:46 PM

Does your son know he is allowed to fire his doctor? He's a minor, and doctor-patient is a power relationship many an adult has trouble negotiating. Maybe he needs you to tell him that it would be ok to seek a different opinion, try a different experiment, go to the nearest med school library and check out a few armfuls of books... To take charge instead of letting some idiot with a pedigree dictate his life choices.

As a child, my pediatrician told my mom to give me Ensure or Boost all the time. I suffered constant fatigue, joint pain, etc. until going completely gluten, grain, and dairy free. Dr. Smith (his real name) never even bothered testing me for food intolerances or celiac. I'm afraid you really have to be your own healer, researcher, and advocate. (But thank God your son has a good mom too!)

I think you have your answer about gluten and dairy already from your son's repeated experiments. He knows how his body reacts to this stuff. He needs to know he is allowed to listen to it. First, the two main blood screening tests for celiac have an 8% false negative rate (they're good but not perfect). Second, there is no good reason to make yourself sick going for the diagnosis if you already know what makes you sick. It is malpractice to tell a patient to make himself sick. The first rule of medicine is to do no harm.

I also take a number of supplements. Reading James A. Duke's books (eg, Green Pharmacy and Herbal Handbook) was really helpful in identifying what foods/supplements to experiment with next, to trouble-shoot problem by problem.

There are tons of ways to add calories other than eating grains. There are tons of tests to run other than celiac if you've already checked that, and tons of lifestyle experiments to run to see what makes you feel better rather than doing something you know will make you feel worse. But first, just my two cents, your son needs a new doctor.

Good luck.

Edit: Another thing you might try if you haven't already. Go through your bathroom as well as your kitchen. Read every last shampoo bottle and pill container ingredients list. Gluten in particular and grain matter in general is in so much stuff, it's unreal. Whether your son is gluten intolerant or celiac - and it sounds like he has the expertise about his own health to know that he is one of the two - he needs to avoid exposure to gluten in all its many forms. I have negative celiac bloodwork, and I literally get visible bloating, GI upset, and hives from using Aveeno lotion. With oats. That I used for years. Find the poison and throw it away!

0d42a3e52e5fe6c4dd7269ce3ab91abb

(55)

on September 05, 2012
at 10:44 AM

I think you are right, this doctor is a pediatrician but our family doc has seen the great results the rest of the family are having with paleo and is actually not dietary fat phobic, but open to it all. He was relieved to know we don't have to listen to the pediatrician. I agree, no point making yourself sick to get a test result that will prescribe something you don't want to take or confirm you should avoid the thing that makes you sick ha ha. the more we talked about it, the more we realized there is no doubt he feels much better gluten free (and seed oil and dairy free).

4
26b0f1261d1a0d916825bd0deeb96a21

(5798)

on September 04, 2012
at 11:32 PM

I say, no, don't reintroduce gluten for the test. He can have blood drawn to determine if he is celiac, or genetically inclined to be. By having the test, if he is diagnosed as celiac, not only will he be pegged with a pre-existing condition, that could make his healthcare skyrocket for the rest f his life, the only treatment for celiac is to not consume gluten. Dairy intolerance and gluten intolerance often go hand-in-hand. Eventually, years later on a gluten-free and dairy-free diet, he may be able to tolerate cheese again, as his intestinal tract heals. Most of my family is celiac and can't handle cow dairy, but can handle goat's milk and goat cheese. Since he's had negative celiac tests before, but going grain-free makes him feel better, he should stay grain, dairy and sugar free. I would, however, encourage further medical investigation to find out if he has other autoimmune disorders or gastrointestinal damage/infection.

94480caec9fbbaacc386d86a45efa720

(1007)

on September 05, 2012
at 12:41 PM

I'm wondering if you mistyped your second sentence? If a patient has been eating gluten-free, the celiac bloodpanel will yield a negative regardless of whether the patient is celiac or not. Even if a patient has been eating gluten continually, the blood tests have a notoriously high false negative rate. The OPs son would have to eat gluten daily for 6 to 8 weeks for "valid" bloodtests (not including the genetic test which is only a risk predictor.) A Valid positive bloodtest could be useful if the son is ever to go live in a dorm in college and needed the DX as proof for the diet.

26b0f1261d1a0d916825bd0deeb96a21

(5798)

on September 06, 2012
at 09:41 PM

sorry if I was unclear. I was speaking about genetic blood testing for celiac carrier: http://www.uchospitals.edu/pdf/uch_007936.pdf

3
F5a0ddffcf9ef5beca864050f090a790

(15515)

on September 05, 2012
at 06:55 AM

  1. Stay off all gluten and all grains. He might not be celiac, but have gluten sensitivity. Gluten can do more damage than just his gut.

  2. I would go with GAPs (strict GAPS for now).

  3. I would supplement his diet with fermented cod liver oil and butter oil to see if it helps him to grow.

  4. I would include active probiotics/some fermented foods. Make sure the bacteria in probiotics is still alive.

  5. Bone broth three times per day will help him with gut healing and other issues.

0d42a3e52e5fe6c4dd7269ce3ab91abb

(55)

on September 05, 2012
at 10:48 AM

Thank you, I looked up the GAPs diet and we are almost there. Just a few tweaks. He was supposed to be having sauerkraut (cabbage and salt) everyday but summer fun got in the way, we will resume that as well.

3
F0a9dea438e7943fa05da318773e785e

on September 04, 2012
at 11:40 PM

Not uncommon at all for celiacs to be underweight and or underdeveloped due to being so sick from the digestive issues and upset caused by the gluten allergy. Like Lyndsay said, other allergies are often co-occurring. In addition to blood testing, has he had any sort of formal allergy testing by an immunologist/allergy doctor? I'm not sure this current doctor knows enough about celiac from the sounds of it if they want him to "eat wheat" to get a better result. Even if he isn't eating it regularly, he may still have the remnants of past bouts of the disease lingering that he is currently fighting off. Best thing you can do now for him to help him grow is avoid processed garbage like Boost and encourage the foods he does like Paleo-wise. Make those for him and encourage him to expand his palate as he is ready. He's a teen so he'll be fickle, but hopefully grow into it. :) And good luck. I bet this is frustrating as a parent!

0d42a3e52e5fe6c4dd7269ce3ab91abb

(55)

on September 05, 2012
at 11:06 AM

he has had testing but it was muscular, can't have chocolate, oats, corn either. He is doing a great job avoiding garbage. we are lucky.

2
94480caec9fbbaacc386d86a45efa720

(1007)

on September 05, 2012
at 01:52 PM

The blood tests for celiac disease will yield a negative if your son has been eating gluten-free. The only test that would be valid is the genetic test and it is only a risk predictor, not definitive. The usual guideline is to eat gluten daily for 4 to 6 weeks before blood testing. Even then the tests have ridiculously high false negative rates especially with patients having only partial damage to the small intestine. An official diagnosis can be helpful in certain cases: if you itemize on your US taxes the cost difference for GF food can also be deducted (but with paleo this hardly matters), dorm living could require proof for needing the diet - you might get a discount if they can't provide proper meals, other institutional settings like hospitals or nursing homes, some patients psychologically need the DX to stay on diet. Otherwise, you don't need the tests to actually eat gluten-free of course.

You might also wish to look into non-celiac gluten sensitivity:

http://www.ncbi.nlm.nih.gov/pubmed/22825366

http://forums.glutenfree.com/topic217.html

http://www.celiac.com/articles/23033/1/Non-Celiac-Wheat-Sensitivity-It-Exists/Page1.html

GAPs sounds like a good place to start if you can get enough calories into him with it. I'm not that familiar with it. I like SCD but it does include dairy though only fermented dairy. I only do a bit of yogurt.

You might wish to peek at these blogs too: http://comfybelly.com/2010/11/cut-out-cookies-using-almond-flour/#.UEdWHlSBWXV

http://milkforthemorningcake.blogspot.com/

Good luck!

54578cc6508b657cad1da21cdf76d74e

(149)

on September 06, 2012
at 02:09 PM

Thank you for the great resources. We are in canada so it will not impact insurance or taxes. Non celiac gluten sensistivity looks a lot like him. He is also allergic to yoghurt, not just diary, my only issue with the GAPS is the restriction of starches. But I have a lot more reading to do, thanks again.

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