Doubts About Not Testing

[alex11602]

My husband, myself and my two children have been gluten free for about 9 months now after I kept getting sicker and couldn't just accept that my mom, sister and I all had IBS so I called the doctors and asked them if gluten could be what was causing GI problems for the youngest and myself, they said yes and wouldn't do any testing but said that if we feel better then don't eat gluten. Not knowing better we took it out of our diet and within 2 days I was feeling alot better, still ups and downs but not constant pain or having to run to the bathroom. Within a week my youngest went from around 9 runny diapers a day to about 4. Then one day we ran out of soy milk (cows milk gave her the runs within 15 minutes) and so the youngest didn't have it for a few days and with no soy milk she was down to about 1-2 runny diapers a day. Needless to say I was feeling very confident that we had our answer.

We went to another doctor for the youngest after a hospital visit for "coffee ground diaper" which tested positive for blood around 4 hours after having a breadstick made with gluten-free bisquick and she had us cut out the top 8 allergens plus sweet potatoes (which my daughter seemed to have an issue with), all artificial colorings, flavorings and preservatives and then try to reintroduce all but wheat and soy. There was a problem with eggs, sweet potatoes, and we never have fish because I have a massive aversion to it (even the smell makes me sick). Again I'm feeling pretty confident.

This doctor also told us that our other daughter's eczema could be caused by gluten since my other daughter and I had a problem with it so we didn't let her get gluten at preschool. One of her main eczema problems was milk and taking out gluten cleared up the rest of it. She doesn't seem to have other food problems even though we all follow the same diet. Her horrible gag reflex that kept her from touching gooey stuff, eating yogurt, potatoes, jello, soups and gave her trouble brushing her teeth is gone too. Also when my father in law handed her something to eat after having fried chicken and onion rings she was telling my that she was hearing voices and her eczema came back so bad that she scratched open her chest and back. Isn't eczema an allergy symptom and not one of an intolerance?

My husband's parents came to visit in July and told him that his grandfather had celiac so my husband stopped eating gluten outside of the house and he felt less gassy and bloated. We also only use honey and stevia as sweetners occasionally because white sugar makes me sick.

Well now my family is pretty supportive, my mom makes sure things are safe for us to eat and all, but they think that we should keep challenging these foods for the kids. We have tried soy for the youngest multiple times now and her reaction hasn't gone away, but seems to be worse and last longer too. She gets the runny diapers (about 3-4 a day) for around a week and she gets these red bumps on her butt that get torn open because of the "coffee ground" poop. When I tried egg beaters the amount of diapers was the same, but only for about 3 days and the red bumps didn't get torn open. Sweet potatoes give her the 2-3 runny diapers a day for week with no red bumps. With all these foods she gets extremely red cheeks and they get warm to the touch. I don't know if these are allergies or intolerances, but since the reaction to soy and eggs has gotten worse I don't think I should keep testing them, but I don't really have a leg to stand on if its not an allergy. And I don't know if she has any other problems with the foods because she just turned 2 and is just starting to speak well.

I'm really not sure what to do now...none of us has an actual diagnosis and that would make things so much easier with family, but we have no insurance to go through testing and even if we did my husband refuses to let me do a gluten challenge even for myself. Plus I don't know if the girls have allergies and intolerances and I don't know where to go from here. I keep thinking that if it's an allergy and we keep pushing it that we are going to end up with a very severe reaction.

Well that was long and I'm not completely sure if any of you would have any words of advice, but if you do please share because I'm starting to doubt myself alot.

[Bubba's Mom]

It sounds like you have a pretty good idea of what doesn't agree with your daughter and yourself? If foods make her ill, don't give her those foods. Your family shouldn't question it, and shouldn't make her try things if you feel she may not tollerate them. You're the Mom..the one in charge.

Testing for allergies via skin prick or blood draw will show you if there are foods that she'll get the sort of reaction that cause anaphylactic shock, but it doesn't show the sort of allergy that makes her digestive system go "out of whack", or affect her moods, or skin.

After I was DXed with Celiac I started reacting more and more to soy. I asked my allergist to test me for food allergies. He did a panel of 98 things. It showed no reaction to wheat or soy. No reaction from any food! The Dr. explained there is a type of allergy for which they have no good way of testing. Some call that an intollerance, rather than a true allergy.

I was told that when one has Celiac disease and some damage has been done to the intestine, various things can "leak out" through the intestinal wall and go into the blood stream. These things are then carried by the blood and deposited in the body, causing inflamation and reactions by the foreign substance that shouldn't be there. That's where you get mood swings, aches and pains, sleepiness or inability to sleep, skin symptoms, etc. along with the digestive issues.

Your daughter may just need time to heal? Once all damage is healed, those foods may not leak through and cause symptoms? I wouldn't push it though. If you know she reacts badly to some foods..just omit them.

If she hasn't been eating gluten, a test for that would come back negative. Money wasted. Food allergy testing would show the type of allergy I mentioned before, but NOT intollerances. Could be more money wasted unless the food allergy testing is something you may want to do in the future if you suspect she may have that kind of allergy that could cause a problem with her breathing?

I was told the best way to figure out intollerances is to keep a food log and note any symptoms, or take away foods you are suspicious of for a while and try adding them back in a small amount later to see the reaction. This may be what your family is trying to suggest you do, but IMO it's too soon to be trying that? Let her have plenty of time to heal first. Once her bowel movements have been normal for several months, it may be safe to try anything questionable, but only introduce one new thing a week, so if there is a reaction you'll know what caused it.

It sounds like you're on the right path..and have been figuring out what she needs? Stick to it, you're being a good Mom.

[alex11602]

First off thank you for explaining the different allergy testing, reading that I'm not sure that it would help us at all. I just wish my husband and I didn't have to worry about every little thing, it's nervewracking.

And family definitely wants us to keep reintroducing the foods...it has been 8 months since she was in the hospital after having soy and we have already tried reintroducing it 5 times and I think it's just time to stop trying, at least for now. My mom also had me give her sweet potatoes twice and then egg beaters once and wants me to try giving her real eggs in something. She is recognizing there is a problem with foods for the youngest but thinks she will grow out of them pretty quickly. And for the oldest since it's primarily eczema and the gag reflex they think that she just has dry skin and the gag reflex stopped because she just grew out of it.

Also thank you for the words of encouragement

[alex11602]

My husband called an allergist that deals with children and food allergies and they said it would be $400 for each of our girls so allergy testing is out. The nurse also said that it probably wouldn't come back positive anyway and gave us some advice, she said that the eczema was probably allergy and just pay attention to any foods that cause it to flare up and avoid them for now since at 5 it is hard to control scratching when you itch that bad. Also told us to keep any offending foods out of the younger ones diet until she is older and can tell us how she is feeling. But of course to make sure that our diet is nutritionally sound. So it looks like we have a game plan for now.

[Bubba's Mom]

I understand how frustrating it is to figure all of this stuff out..and the double whammy is having family members telling you to do things you aren't comfortable with.

If there was a reliable, absolute test that would give you all of the answers it would be great, but my allergist said that test doesn't exist yet. It's really a lot of trial and error.

The food log can really help figure out causes of flare ups. Sometimes they're delayed.

Best wishes to you and the kids!

[Skylark]

You have to stop doubting yourself! You have things figured out really well, probably better than a doctor could ever do.

Tell your family the kids can challenge foods on their own when they are adults and are able to understand the consequences. They are asking you to poison your kid and the answer needs to be "no". For what it's worth, with my childhood allergies, our allergist told us that kids don't usually outgrow allergies until adolescence. He also told us that many allergies return in late adulthood (50s and beyond).

[alex11602]

Thank you! I only want to do what is best for the girls and I know that they sometimes feel left out right now, but as long as they are healthy I guess it doesn't matter.

[Skylark]

I felt left out with the childhood allergies, so I empathize. I was off a whole list of foods including milk and wheat.

Mom did little things that helped a lot, like sending a rice flour cupcake with me to birthday parties, or rice krispie treats with me to school when there were events in class. Classroom events weren't too bad because I preferred rice krispie treats to cupcakes (as did a lot of other kids), but friends' parties with a fancy cake and ice cream were hard. For lunch I usually had a thermos of soup in my lunchbox in the winter and it looked much better than the sandwiches other kids usually had.

The funniest thing was my thermos of watered-down Kool-ade or fruit juice instead of the little carton of milk other kids had with their snack in preschool. I was really upset that I couldn't drink the milk until the other kids started complaining that they couldn't have Kool-ade too. I decided I must not be missing out after all.

[Jeannie L]

Alex, after raising a daughter with epilepsy if there is one thing I have learned, I have to be the advocate for my child's health against any and all - including family! I just wish I knew back then what I know now because I can identify with a lot of the symptoms you have described and wonder now if I could have helped both my girls, and myself, had I known about gluten.

When my oldest was 2, 36 years ago, I slowly figured out that she and I both had problems with sugar, whole wheat and milk. I was able to control her diet as she grew up and she would even refuse treats with sugar at school. My second daughter, the one with epilepsy, was not so easy to control because she would just say the treats didn't have sugar in them. Yeah, right! To this day, she will not consider a permanent change in diet even if it would possibly stop her seizures!

When they were teenagers, I didn't try to control their diet because they were older and had to deal with the reactions. I didn't know about celiac then nor did I tie my grandmother's health problems to our diet reactions. Now, all these years later, I've learned about gluten and both my oldest and I have realized we have a problem with it.

Years ago my OB/Gyn and I worked through all the issues with various foods because of problems I was having and over the years I have avoided whole wheat (not knowing about gluten) and dairy because of the process of elimination and reintroduction that we did back then. As time has gone on, I found I also was allergic to tree nuts and citrus but those cause the more known allergic reactions. My OB/Gyn is long since gone but when the gluten question came up, I did my normal and did the elimination/reintroduction thing and it was very obvious. I talked to my allergist about it and he talked about tests but decided to just have me continue gluten free because it was working and I am to alert him if any issues arise.

My daughter has gone the route of testing and has been dealing with the pain caused by the gluten, pain she has dealt with for many years, because she is going to have an endoscopy and colonoscopy next week. She tried gluten free and had instant relief but has chosen to go the testing route. She needs to have those tests anyway so it's all good.

Sorry this has been so long but the key point is that you are your children's advocate. Don't let anyone bully you into trying things that you fear will hurt your child. Also, we didn't have the current tests back when I needed them but my doctor saw the symptoms, worked through the process of elimination/reintroduction with me and consequently told me to stick with my diet based on the outcome. My allergist has done the same now.

I hope this helps and I wish you peace in this journey.

[Takala]

It's more of a "control" issue than that of having an "official" diagnosis.... you just have to deal with your mother not respecting your wishes on how you want your children to be fed, period.

The "eczema" you are describing could more likely be DH, the rash that goes along with some forms of celiac.

Doctors, especially the celebrity types on cable tv and in the popular media, give out incredibly bad advice all the time on health matters re food, having people who want to cite them for the "last word" to contradict what you're doing in response to what you observe is not legitimate, as long as you are not doing any harm. Hey, guess what, avoiding sweet potatoes isn't a harmful activity nor does it create a nutritional deficit.

The link between soy intolerance and gluten intolerance/celiac is so well documented (at least by anecdote from what I have read over the past decade in hundreds of blog entries) it is a non- starter if somebody else wants to try insisting soy is "harmless" with me. Soy may be okay for some people to eat, but it makes other people sick, and it is NOT a health food as most of it is genetically modified.

It doesn't really matter if it is an auto immune reaction, an allergy, or a food intolerance, if it makes somebody sick, they should not eat the food causing the reaction.