Food Intolerance/Allergies, WWYD next?

[Monica_in_Switzerland]

In brief...

 

DS is gluten intolerant.  Our path to this is as follows:

 

- Stomach pain/digestive issues led to blood test, which was + for gluten intolerance

- biopsy was (to everyone's surprise) negative

- Went on GF diet anyway, and symptoms disappeared for 6+ months

- Stomach pain began again.  Another blood test negative for gluten reaction (b/c he was on a strict GF diet)

- Gluten trial of 6 months (gluten put back into diet).  New blood test at end showed strong + for gluten intolerance again

 

Eliminated gluten again, as gluten intolerance diagnosis now considered definite. 

 

Now Gluten free for about 2-3 months, and stomach pain back again.  No constipation or noticeable bloating, just pain. 

 

I'm thinking of doing a 1 month trial with elimination of milk and milk products. 

 

Is this what you would do next?  I don't want to go all the way to a strict elimination of EVERYTHING (GAPS type diet, etc.) unless the milk elimination fails to fix the pain.  It seems like milk proteins are the most likely culprit since they are often times correlated to gluten intolerance. 

 

What does the hive say?  Is this the right next step?  The pediatrician and gastroenterologist have basically washed their hands of this and want to just give meds for pain relief.  Sigh. 

 

 

[Unicorn.]

The pedi and gastro are idiots. Has he had any allergy testing done? If not, I would start there, and see if he tests positive for anything. Remember a negative isn't necessarily a neg. I think you are on the right track, and a dairy free trial is probably a good idea. I also wonder if he could possibly be getting some cross contamination of gluten from somewhere. Occasionally gf or wheat free products change, and surprise! they now have wheat or are not certified as gf.

[Monica_in_Switzerland]

The pedi and gastro are idiots. Has he had any allergy testing done? If not, I would start there, and see if he tests positive for anything. Remember a negative isn't necessarily a neg. I think you are on the right track, and a dairy free trial is probably a good idea. I also wonder if he could possibly be getting some cross contamination of gluten from somewhere. Occasionally gf or wheat free products change, and surprise! they now have wheat or are not certified as gf.

 

The only other testing he's had was a breath test (methane?) for a lactose issue- negative and a general blood test that measured his sensitivity to several categories of food allergens.  I can't remember what this test was called, but he was "moderately" reactive in every category.  This was prior to eliminating gluten, and so ped thought those would calm down once gluten was out.  Have not re-tested those. 

 

He has hay fever which is much worse when he is not GF.

 

Would a skin scratch test for allergies be a good move, or is this only for environmental allergies?  We had talked about this with ped, but never did it.   

[Unicorn.]

I'm no expert, but if he was moderately reactive to dairy and other foods, I don't see how removing gluten is going to make him not reactive to dairy, kwim? I would go forth w/ a dairy free trial. Then follow w/ things like eggs, nuts, etc. I hope you find some answers.

 

I once had a doc tell me we would never know what was causing my son to break out in hives. I figured it out in about a week.. turns out it was blue dye number one.

 

I would also keep a journal of what he eats every day, and when he has pain. That might help narrow it down faster.

[Soror]

Yes, milk would be the next step as there is a high correlation b/t milk and gluten intolerances. It wouldn't show up on a lactose test because the problem is casein, the protein, not lactose, the sugar. He might be able to tolerate dairy after he has had some healing from being gluten free. Next I would look at soy, as soy and dairy are often together, MSPI. It would likely be beneficial to do a healing/more restrictive diet for awhile anyway, I wouldn't do that long term unless you had to though.

[Soror]

Fwiw it could just be that he doesn't tolerate milk, period. I had hoped that my milk intolerance was secondary to damage from Celiac's, however even after 3 yrs strictly gf/df I don't tolerate it. It is not all that uncommon to be milk intolerant. My kids seem to be doing ok with the milk reintroduction, except for my dd1, she was milk intolerant from birth though. 

[Monica_in_Switzerland]

I'm no expert, but if he was moderately reactive to dairy and other foods, I don't see how removing gluten is going to make him not reactive to dairy, kwim? I would go forth w/ a dairy free trial. Then follow w/ things like eggs, nuts, etc. I hope you find some answers.

 

I once had a doc tell me we would never know what was causing my son to break out in hives. I figured it out in about a week.. turns out it was blue dye number one.

 

I would also keep a journal of what he eats every day, and when he has pain. That might help narrow it down faster.

 

I've tried keeping a food log, but his pain is essentially all day every day, but not very strong (not affecting his ability to play, do school, etc.).  This is one of my reasons to suspect casein, as it causes similar reactions to gluten (pain can be delayed from actual ingestion by up to 24 hours).  We eat very little/no soy, but eggs are a good suggestion. 

 

We have a pretty "clean" diet in general- very little processed food. 

 

How did you narrow down to a food dye so quickly?  That's great!

 

The whole reason we did the gluten trial in the first place (after going GF for a while) is because, since the pain was coming back, our dumb gastroenterologist tried to convince us that it was psychosomatic/stress/anxiety related and not food related.  My ds is the world's calmest kid EXCEPT when having a blood draw, so this was just ridiculous.  But we did it anyway, in the hopes that proving his gluten intolerance would convince them to investigate further.  No such luck, just a wasted 6 months. 

[Luckymama]

Dd19's soy allergy manifests itself as stomach and intestinal pain. We ate very little soy (in some prepared foods like certain bread or rolls and some seasonings) but that little bit was enough. It took almost two years to figure out her issue----it was awful.

 

She needed scratch and blood allergy tests. Elimination diets did not work. I'd go for proper allergy testing.

[Laurie]

 

 

What does the hive say?  Is this the right next step?  The pediatrician and gastroenterologist have basically washed their hands of this and want to just give meds for pain relief.  Sigh. 

 

Similar experience for my son when he started having stomach problems in his late teens...his blood tests and intestinal biopsy for celiac were negative, and the gastro dr. left him with no choice but to keep taking Prilosec.  So...we went to a naturopathic physician who specializes in digestive disorders to see if she could help.  Based on his food allergy blood panel,  he was reacting to several things, not just gluten and dairy.   For example, cane sugar was also a problem for him...apparently sugar cane and wheat are in the same plant family.  Anyway, he felt better when he changed his diet,  and the dr. also helped him to safely taper off Prilosec. 

 

I hate to think of anyone taking pain or any other medication , for who knows how long,  when a diet change alone might bring relief.   I think you're on the right track,  and I hope your son starts feeling better very soon! 

[Monica_in_Switzerland]

Dd19's soy allergy manifests itself as stomach and intestinal pain. We ate very little soy (in some prepared foods like certain bread or rolls and some seasonings) but that little bit was enough. It took almost two years to figure out her issue----it was awful.

 

She needed scratch and blood allergy tests. Elimination diets did not work. I'd go for proper allergy testing.

 

 

Similar experience for my son when he started having stomach problems in his late teens...his blood tests and intestinal biopsy for celiac were negative, and the gastro dr. left him with no choice but to keep taking Prilosec.  So...we went to a naturopathic physician who specializes in digestive disorders to see if she could help.  Based on his food allergy blood panel,  he was reacting to several things, not just gluten and dairy.   For example, cane sugar was also a problem for him...apparently sugar cane and wheat are in the same plant family.  Anyway, he felt better when he changed his diet,  and the dr. also helped him to safely taper off Prilosec. 

 

I hate to think of anyone taking pain or any other medication , for who knows how long,  when a diet change alone might bring relief.   I think you're on the right track,  and I hope your son starts feeling better very soon! 

 

 

So based on this, I should probably be asking to a referral to an allergist rather than a gastroenterologist- correct?

[Unicorn.]

I've tried keeping a food log, but his pain is essentially all day every day, but not very strong (not affecting his ability to play, do school, etc.).  This is one of my reasons to suspect casein, as it causes similar reactions to gluten (pain can be delayed from actual ingestion by up to 24 hours).  We eat very little/no soy, but eggs are a good suggestion. 

 

We have a pretty "clean" diet in general- very little processed food. 

 

How did you narrow down to a food dye so quickly?  That's great!

 

The whole reason we did the gluten trial in the first place (after going GF for a while) is because, since the pain was coming back, our dumb gastroenterologist tried to convince us that it was psychosomatic/stress/anxiety related and not food related.  My ds is the world's calmest kid EXCEPT when having a blood draw, so this was just ridiculous.  But we did it anyway, in the hopes that proving his gluten intolerance would convince them to investigate further.  No such luck, just a wasted 6 months.

I really dislike docs who say it's all in the head, or let's just do pain meds to cover up symptoms. I feel bad for your poor ds. I think other posters have some great insight and suggestions.

 

As to figuring out my son's allergy.. He had 3 horrible reactions that required trips to the doc for oral steroids. I started thinking about when those reactions happened. 2 of them were when we went to the lake, and the other was after a trip to the pool. He'd been both places several times, so I knew it wasn't the water or the life jackets causing the problem, so I started looking at other common factors, and narrowed it down to sunscreen, or Gatorade. Ruled out the sunscreen, as he did use that other places, too. That left one specific Gatorade.. the blue one. The only time he ever had Gatorade, was these three places. And I remembered that on each of these trips, it was the blue one. I checked ingredients and narrowed it down to coconut oil, and blue dye #1. Started looking at other products to see if either one was in anything else. Coconut oil was in some other Gatorade he'd had, so after he recovered, we waited a bit, and gave him something w/ blue dye, and bam!

 

I had done something similar w/ baby food when he was little. One particular baby food made him have violent vomiting reactions, and I narrowed that down quickly too.

 

It was fairly easy, as we didn't do a lot of processed stuff either. It's harder when it's natural foods. He was also my kid that couldn't have red delicious apples, but could eat other apples.

[Greta]

I had a very similar experience in that going gluten-free cleared up my chronic digestive problems . . . for several months. Then my symptoms started to return. I did a lot of experimenting with my diet and made a few discoveries:

 

1. Dairy is not a problem for me (though obviously that doesn't necessarily imply anything for your son. It's worth doing the experiment to know for sure. I gave it up for six weeks, then added it back and had no problems.)

 

2. Sugars and starches, no matter the source, ARE a problem for me. (It doesn't matter whether it's healthy whole grains and fruit, or cake and cookies, I cannot eat more than about 60 grams of carbohydrate without my symptoms returning).

 

3. Eating fermented foods and taking probiotics every single day helps a great deal. I eat yogurt and creme fraiche but there are non-dairy sources as well (are you familiar with Nourishing Traditions?).

 

I hope something there might proof useful for your son. Good luck!

[Soror]

I would say it certainly wouldn't hurt to visit a gastro or an allergist for an allergy test as that is an easy test to do, however just because he doesn't show an allergy doesn't mean a particular food is safe. He could have an allergy to any number of foods and it could cause stomach pain or it could be an intolerance to any number of foods, which  wouldn't be caught on the allergy test. I would suspect dairy first because it statistically the food most likely to cause problems and especially common along with gluten.

[Luckymama]

So based on this, I should probably be asking to a referral to an allergist rather than a gastroenterologist- correct?

Yes. See if you can eliminate a true allergy before trying to sort out any intolerance(s).

[Monica_in_Switzerland]

I had a very similar experience in that going gluten-free cleared up my chronic digestive problems . . . for several months. Then my symptoms started to return. I did a lot of experimenting with my diet and made a few discoveries:

 

1. Dairy is not a problem for me (though obviously that doesn't necessarily imply anything for your son. It's worth doing the experiment to know for sure. I gave it up for six weeks, then added it back and had no problems.)

 

2. Sugars and starches, no matter the source, ARE a problem for me. (It doesn't matter whether it's healthy whole grains and fruit, or cake and cookies, I cannot eat more than about 60 grams of carbohydrate without my symptoms returning).

 

3. Eating fermented foods and taking probiotics every single day helps a great deal. I eat yogurt and creme fraiche but there are non-dairy sources as well (are you familiar with Nourishing Traditions?).

 

I hope something there might proof useful for your son. Good luck!

 

Yes, I own Nourishing Traditions and was doing pretty well at keeping us in fermented foods, but sort of fell off the wagon at some point when DS's symptoms came back and I was pulling my hair out.  It's time to start that up again. 

 

I really hope it's NOT dairy... we live in Fondue Land for crying out loud!!!  lol 

[sbgrace]

I would see an allergist. You can relatively accurately test for food allergies, so I would start there. Positives can be inaccurate, false negatives are far less likely for actual allergies. So if you do get an unexpected positive, do two weeks off and then reintroduce to confirm or eliminate the food as an actual allergy. My son tests positive for peanut, but is not actually peanut allergic. 

 

 

[Laura in CA]

The pedi and gastro are idiots.

We've discussed this before, but if it's the same gastro we had, yes -- total idiot. :glare: grrrr

 

Sorry! I know that's not helpful :) ... but I'm still surprised at how unhelpful they were, and how inflexible in their thinking. We had to figure it out on our own, & consult a specialist back in our home state. As Patty Joanna said, testing is inferior to knowing your reactions. My son is in college now, in the U.S., and just this week had a frightening reaction to ... what? Maybe a cleaning fluid his suitemates used? Just when we think we have an answer, he reacts to something new. I (naively) hoped he'd "grow out of it."

 

I'm following this thread with interest - many good ideas. I'll ask my son to look into dyes. Monica, I hope you figure it out.

 

 

ETA: We now know he's allergic to carrots, almonds, peanuts, green beans, various grasses & trees, dust mites, rabbits, cats, etc.

[Tiramisu]

I would see an allergist. You can relatively accurately test for food allergies, so I would start there. Positives can be inaccurate, false negatives are far less likely for actual allergies. So if you do get an unexpected positive, do two weeks off and then reintroduce to confirm or eliminate the food as an actual allergy. My son tests positive for peanut, but is not actually peanut allergic. 

 

I agree. 

 

Since the OP's ds did test positive before on allergy tests before, there's a very good chance he will again. And since the previous tests were blood tests, skin scratch tests are likely to give helpful results because they are considered more sensitive.

 

Regarding what the previous doctor said about removing gluten may prevent the other things he tested positive to from becoming an issue, I think there's some sense to this. One reason our allergist thinks my dd suddenly started getting hives was that her immune system was very stressed from repeated viruses this winter, so what may have been a mild allergy previously became a more serious one. And it could have become more serious if we hadn't learned quickly and got the possible offenders out of her system.

 

The other thing about this dd is that she has always had the most obvious seasonal allergies in the family but she did not test positive with the blood test. So I believe people who say they are allergic even though their allergy tests are negative.

 

I'm inclined to get the scratch test to get a better sense of what's going on. Some people may find testing redundant, but it's been extremely helpful in our family. We have environmental and food allergies I don't think we would have easily figured out without the testing and not without risk. In one day, and a $30 copay for each, we were on the road to helping them feel better.

 

ETA: Our pediatrician, knowing our kids long history of stomach complaints, just suggested that my kids my have an eosinophilic disorder. They do test positive on allergen tests without necessarily showing typical allergic reactions. Two have a history of high eosinophils in their blood tests. The OP might consider asking a doctor for a CBC.

[Monica_in_Switzerland]

Thank you to everyone!  I have an appointment today with the pediatrician to discuss everything. 

[bettyandbob]

As others said, try getting allergy tested.

 

If you find a lot of environmental allergens, try eliminating foods that are related to the various airborn allergens. I found that eliminating foods to which my oldest had very mild responses to and therefore not a problem according to the doctor, made a big difference for ds. First, I think his body wasn't dealing with a buildup response, being inundated with mild allergens and dealing with them all. Second, I think doing so we ended up eliminating food that was botanically related to this pollen and that pollen. I saw a chart recently showing foods to avoid based type of pollen allergy. I'm sorry I don't have a link, but I think you should be able to google it. I guess I'm saying to consider plant families when you look at results, because there is no way yo test for everything.

 

I'd also consider eliminating dairy and soy. After several months you can add them back.

 

One thing that's interesting is that the return of stomach pains seems to coincide with pollen allergy season (at least it does in my region, I don't know about Switzerland). So, I think the allergy testing could be promising.

[Melissa in Australia]

a scratch test only tests for a histamine reaction.

 

Dh passes scratch tests with no reaction, but he has sensitivities to many foods etc. ( He has Multiple Chemical Sensitivities)

the only way he could be identified for him was a very strict elimination diet under the guidance of a reputable allergist. He basically had a very strict diet for a month, then each week he added a new food. on the first day of adding a new food he had to eat a lot of it- example the week he added bananas he had to eat 6 bananas in the day- that way if he was going to react he would react badly and it would be obvious that he was sensitive. there was an order of which foods were added when.

 DH discovered that some foods he has to avoid completely, some foods he could have in very small amounts occasionally, and some foods if he had regularly would build up in his body gradually making him more and more ill.

[Monica_in_Switzerland]

As others said, try getting allergy tested.

 

 

 

One thing that's interesting is that the return of stomach pains seems to coincide with pollen allergy season (at least it does in my region, I don't know about Switzerland). So, I think the allergy testing could be promising.

 

Yes, that is a good point.  I will have to check my records for the last time, but this time around, his returning stomach pain is definitely coinciding with seasonal allergies as well.  Hmmmm...  

 

Ok, I just remembered that yes, indeed, it was last summer that we began his gluten trial, so it must have been last spring that his pain returned. 

 

Interesting! 

[Monica_in_Switzerland]

Just saw pediatrician, and here's the current plan:

 

- blood test tomorrow, to make sure anti-transglutaminase is in normal range again (no longer reacting to leftover gluten in system), as well as retesting sensitivity to the major food group allergens- can't remember what this test is called...

 

- Once we have results, get an abdominal ultrasound just to make sure all is well physically

 

- Then refer to gastroenterologist and allergist to decide on either elimination diet, further allergy testing, etc.