Hi, I have a 21 month old who has been struggling with "food intolerances" since birth. She was exclusively breastfed until starting solids around 9 or 10 months and we are still happily nursing. She had severe reflux from day one and at around 2 months she started having green mucousy stools with blood streaks. I did a total elimination diet and by the time she was around 6 months we had it pretty well figured out and she started doing pretty well as long as I avoided the top eight allergens plus oats. When she started solids she started dealing with constipation and when we found that she was getting a hidden source of gluten we took it out and she became regular. She was sleeping awesome at 15 months, about 12 hours straight a night. At that point our then 2 1/2 year old went through a 3 month gluten challenge so she could be tested for celiac. We didn't plan on doing a gluten challenge with our 21 month old but it was hard to keep her from the food so we decided to have her do it as well, hoping that she could get tested also. She was miserable the entire 3 months and in the end the GI did not feel that it was necessary to test her. We immediately put her back on a gluten free diet and her symptoms improved but she is now not able to tolerate as many things as she was before the gluten challenge. We took her to an allergist which wasn't very knowledgeable on food issues, she wasn't very much help at all. Her main symptoms seem to be GI related but she does get red watery eyes and a runny nose. She also has gotten a itchy blistery rash on her bottom a few times and the last time she got it I was able to directly relate it to an accidental gluten exposure. I get a little overwhelmed sometimes just trying to figure it all out!
I guess my biggest question is does this sound like leaky gut we're dealing with or does she seem to be suffering from multiple food allergies?
Thanks so much for your help!
Well, both. Please don't beat yourself up over doing the gluten challenge. You wanted/needed to know. By the time it was time for the test, you really already had your results -- more reliable results than the blood tests (but what were the findings for her sibling?) There are those who react badly to glutens and don't test positive for the usual celiac indicators. Regardless, one needs to avoid what makes one ill or symptomatic.
While she was "miserable," as you say, her intestines were likely remaining quite inflamed and irritated. "Leaky gut" is more a visual description of a process that goes on when the intestinal linings are damaged and lose integrity. This can be caused mostly by food reactions, antibiotic use, GI infections, formula use in premature infants, and use of NSAID drugs like aspirin or Motrin.
Yes, it seems that some people, especially young children, can develop new food sensitivities during a period of intestinal assault. It's been demonstrated in studies that various uninvited, intact proteins can make their way through the intestinal wall into the blood stream, where the body doesn't expect to find them, leading to allergic sensitizations. The good news is that the newer food sensitivities are often less determined and may go away more quickly. Good avoidance of anything that appears to upset the GI system, or cause rashes, is your best bet for keeping the intestinal integrity solid and allowing the sensitizations to hopefully lose their hold over time. Each time there is a re-exposure to an offending food, the sensitization is reinforced.
Some of these little ones whose moms don't find the causes and answers to their suffering, end up as failure-to-thrive, living on heavy medications, and/or developing lifelong debilitating intestinal conditions; gaining labels such as Crohn's, Ileitis, or Irritable Bowel Syndrome. Your good continued elimination diet guidance for your daughter, support of her intestinal health with good prebiotics, probiotics, fatty acids, and healthy foods will speed her recovery and she may "outgrow" all or likely most of her sensitivities, and she will avoid chronic disease.
Linda F. Palmer, DC
"The Baby Bond"
Thank you so much for your advice and your encouragement! Her sister tested negative on the blood test and the GI decided it wasn't necessary to do any further testing since we don't have a known family history of celiac, although I do know for sure that me and both of my parents are gluten intolerant and I have autoimmune thyroid, rheumatoid arthritis, and type 1 diabetes that all runs in my family so who knows. During the gluten challenge she was tired all the time, irritable, didn't sleep well at night, started having major accidents despite being potty trained before the challenge, constipated to the point to where we had to give her suppositories otherwise she would go a week or more without pooping, when she did go it was grainy/sandy light colored extremely smelly and sometimes had a ton of mucous. She also got a distended belly, really pale colored skin, and would get nosebleeds. You're absolutely right though, before we even had her tested we had our answer...we knew gluten was making her sick. All or most of her symptoms resolved within just a couple weeks of being off gluten.
Do you think I should try to seek out an allergist that is more knowledgeable about food intolerances and allergies or would you say keeping up with the elimination diet is just as good as doing allergy blood testing?
There are no allergists, to speak of, who have any understanding of food intolerances. They are educated that IgE reactions --- the immediate-type hives/swollen lips/breathing probs reactions --- are the only "real" food reactions --- the only thing worthy of being called an immune reaction, or allergy. They are then taught that no other kind of food reaction matters much, that food elimination is dangerous and too difficult to bother with, and that most food reactions are psychological. That one thinks they have a food sensitivity is one of the psychological criteria that proves it's psychological. LOTS of people are distressed or even a little depressed as the RESULT of having difficult and uncomfortable challenges, but these symptoms are used to add to the diagnosis of hysteria. In this case, it'd be hysterical mom and I'm sure your thyroid symptoms will help confirm that.
I'd love to see these allergists have a course in immunology. There's a whole lot more to the immune system than IgE antibodies, there are plenty of mast cells in other parts of the body, and the intestines have the greatest immune complex in the body. The only other food reaction that they can understand are the clear-cut cases of what they call celiac, where their certain indicators can be detected in the blood. Even very common milk protein allergies are misunderstood to be lactose intolerances (even while lactase enzymes are not helping). Scientists with PhD's in immunology or other physiologies (as opposed to MD's) know and study all kinds of immune system and hormonal reactions to foods. Unfortunately, even the "alternative" commercial blood tests (IgG and lymphocyte) just aren't reliable enough. Scientists get very detailed laboratory findings in their many studies but they still always confirm with the gold standard: dietary food challenges. Why this medical attitude? The food and drug industries have powerful influences on medicine and on what is and is not allowed to be diagnosed. If there's not a drug for something, it doesn't exist or isn't important. I complained for years about my night time leg restlessness, to nothing but chuckles from docs. Then one day there's this ad on TV for a drug for a "disease" known as Restless Leg Syndrome. I don't use the drug but it's so nice just to be verified. When there's a patentable drug available that blocks common intestinal food-sensitivity reactions, the TV commercials will tell us that most all of us have some kind of food reaction (that's true) and need their expensive drug. Mark my words.
It's surely nice to receive some confirmation from a mainstream professional --- to appease those who criticize us, to appease the self-doubts these others cause, and to feel more comfortable that one won't be "poisoned" if ever having to stay in the hospital (a BIG challenge for some). It's clear that you have plenty of understanding and experience to find the healthiest diets for your own children. My advice would be to go with this and forget about professional confirmation, and if anyone is ever in the hospital, investigate every thing that goes into their systems (and not just rely on promises). If you really want some help with your daughter's food challenges, try an osteopathic pediatrician, or look into local blogs/chat groups to see if you can find any local referrals for an aware doctor. You can also call a lab that does IgG tests and ask for a list of doctors in your area that uses them. This should point out some more-educated/enlightened docs, but only try one who uses those tests frequently. I've found some are pushed into it once or twice by a patient but don't really know what's going on. ENT docs and endocrinologists are occasionally enlightened. GI docs will generally be as limited as allergists.
Hope I wasn't too vague or wishy-washy here : )
Linda F. Palmer, DC
"The Baby Bond"
Thank you so much! Not vague or wishy-washy at all :) This really is probably what I needed to hear. Despite my girl's being on a "restricted" diet I believe they probably still eat healthier than a lot of kids their age, as long as they're healthy I guess that's really all that matters. I think sometimes we (mothers) just get overwhelmed and would like to think that we could go to a specialist and get all the answers but that's just not always the case. I will just continue to stick with my gut, even when sometimes people close to me may think I'm overreacting. I just have to keep telling myself, whether it's life threatening or not, if something is making my child uncomfortable than it's definitely not an overreaction to keep them away from it.
Thank you SO much for volunteering your time! It's nice to be able to talk to a professional and not have to pay a $40 copay :p