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My DD also has a severe soy allergy, I noticed the same with apples with peels. We reverted to natural applesauce or peeling the apples (sadly removes a lot of the vitamins) .
I don't have any suggestions though, we are newly navigating the soy allergen issue.
she's still reacting at least twice a week to unknown triggers (soy or something else.)
Skin testing of suspected allergens was a bust yesterday. Nothing, not even soy showed up positive despite the RAST test and marked improvement since its elimination.
The allergist was apologetic and explained that while she may not have an IgE reaction or response, she obviously is having a gastro response to soy and other stuff. She agreed that the endoscope is what she would do next to find out truly how damaged her esophagus is from the reflux.
I dropped off the negative results to the gastro when I left the building yesterday at noon, so I'll call this afternoon to prod them along to see what the plan is.
All I do know, is that since having to be off of zyrtec and allergy meds for the skin testing, she complained about her chest and belly hurting almost daily she stopped her meds last Wednesday and Friday is when things started going downhill with severe diarrhea again and the complaints.
I'm not sure on the EGID front though either....its just the next dx to eliminate.
We met with the gastro on Friday, who is now bringing the scope on the table sooner than later in response to the allergist's plan.
We have allergy skin testing on Wednesday of this week to determine any other major allergen issues. I am to call the gastro's office with the findings or to prompt them to obtain the results from the allergist.
she verbally simply said we would likely scope if any other allergens show as positive for an esophagus condition (dumbing it down for me I presume.)
Her handwriten note on the appt notes: "pending ai test (allergy skin test) probable endoscope to evaluate for ee"
So still moving forward, not celiac-based, but the quest to decipher her gastro and reflux problems.
And I'm fully aware that I'm now more on an allergy quest than a celiac one if necessary, but honestly I haven't found another forum that is similar enough since her issues are prominently gastro related. Just being clear that I am fully aware that celiac is not an allergy.
I do know that I have a refluxy,ezcema laden kiddo who vomits regularly and has upset stomach daily who can barely get to the bathroom in time for her foul diarrhea. She will soon hit the embarassment issue at school for her explosive and noisy movements as the toilet is just a sub room within the classroom where everyone (classmates and teachers) can hear what's going on.
I have an irritable, clingy toddler every evening who needs her back patted to help expel the gas.
I am sure that my health deteriorating is due to the stress and focus on hers right now. But I'll keep chugging along and just vent and whine in here (nobody feel the need to respond! ha, just let me get it out somewhere)
Met with the allergist yesterday...and honestly I'm not optimistic to answers. That or I'm just frustrated.
We discussed her history and reaction patterns, I gave her the detailed food logs for the last three incidents, all of which were soy-free days. Before we got to that she explained that soy is typically a minor allergy that kids do grow out of. I then explained the cycle and extreme reactions she gets, gave her the daily logs and she agreed there is something else causing her the problem.
We have skin testing on 5/15. She's testing wheat again because she's suspect of that despite the blood test (which is good for allergy sake, not celiac) and focusing on her suspected reactions to fruit. She's testing a slew of things but specifically adding wheat and the fruits.
I was just slightly disappointed because while a very pleasant doctor , she seemed not overly concerned because she wasn't have any breathing or wheezing issues with her reactions (as in like a severe peanut allergy) so I felt like it was 'oh, she just gets red cheeks?--no biggie'
I explained that if whatever she is struggling with if anything like mine, she is likely in abdominal pain from spasms or cramps. That we need to know what to avoid even if she's frigging labelled IBS, I just need to know what to weed out of her diet to let her not vomit once a week or have four to five bowel movements a day.
I've been nauseous every night for almost two weeks, no doubt stress induced.
3/10 - Gastro appt - to discuss scope for reflux
3/15 - Allergist appt - for skin allergy testing
Tomorrow is our allergist/immunologist meeting (finally!) and hopefully we will come back with some plan of action. Either additional testing or an action plan to manage her confirmed soy allergy.
She is still randomly reacting to something though, sh had a bad reaction on Sunday to something I cannot pinpoint.
I wrote her food log out before I forgot anything:
Observed: flushed cheeks and bumps around mouth noticed around 3pm.
Foods eaten prior:
-Apple Cinnamon Nutrigrain bar (soyfree)
-1 piece of wheat bread for french toast (homemade, soy free)
-turkey sausage (soy and gluten free)
-1 Betty Crocker Oatmeal cookie (soy in the ‘may’ category)
-Capri Sun fruit punch juice box.
-Stouffers’ Whale crackers (soyfree)
*Flushed cheeks noticed at 3ish*
4:15-4:30 – three trips to restroom
4:30 – diarrhea response.
Irritability through evening and morning.
Yesterday when I picked her up from school I saw the flushing again and asked about her foods. They saw the flushing as a result of her brief time outdoors which is possible, but I'm trying to make sure we are finding all these hidden sources of soy.
Yesterday she had mini-raviolis (soy content unknown so far, but obviously gluten) and fruit for lunch. She got her soyfree alternatives for all the snacks of the day.
random note for my ailments:
Since doing the gluten challenge Feb-April, I am now losing a 2nd toenail randomly and continue to have bad headaches and nausea in the evenings after 4pm.
I'm still learning myself but from what I've learned:
IgA -- control numbers, nothing indicative other than the fact you do create enough antibodies to allow the further testing.
IgG -- indicative of long term or chronic infections -- while you are on the high end, it is within normal range?
IgM -- (this I haven't seen too often on this board) is related to new infections or possible parasitic infections. "high levels of IgM can mean a new infection is present"
What I gather is, they did the IgA to assess if you have enough antibodies to allow the IgG to be accurate. If you don't have enough IgA, they do alternate measurements or alternative testing.
We have several longtime moderators who are pretty savvy in reading this better or explaining better though, I'm sure one of them will pop on:)
I'm new to this as well, but I do recognize that the first exam, the one that is high is actually your control. That IgA indicates you have enough antibodies to allow the following tests to be run. That is not indicative of celiac in of itself.
The following tests all show you currently in a 'negative' for celiac disease.
That is not to say you don't have it of course, especially with you having been glutenfree leading up to your blood tests.
There are others more familiar with reading the results, so please chime in
Thank you everyone, I have days where I wonder if I'm barking up the wrong tree with all of this.
Vomit free since Sunday, but I think she's still nauseous, she holds her belly when she's sitting on the couch and rubs it.
Nominal appetite still.
Poop report from school for yesterday was a solid, but still pale yellow.
I had never made a note of it before, but noticed mouth sores are mentioned elsewhere on the board. I've never thought twice of it, but she's had one mouth sore in the corner of her mouth for months. It more noticable some days than others, but its like a small blister (without a head) right in the corner of her mouth.
I'm fairly confident that the allergist/immunologist will, like several board members here, suggest a trial period of gluten-free to see if we find any improvements. While this is good, it will be difficult.
My little one goes to daycare, no way around that. I've confirmed with our location that she is the only Soy Free kid, we have several nut allergy kids but ZERO gluten/celiac kids.
While I know that it will be me providing 100% of her foods, and having to prepare them at home is not a problem, its the environment and their willingness to help. I'm sure if things go this direction, I will simply have to meet with the director with some protocol information and set out to make an action plan together with them how to have a Celiac kiddo in their mix.
Rough weekend again.
Little one has started up her random vomitting again. Friday to the point of having to be picked up from school.
Severe liquid diarrhea throughout the weekend.
Nominal appetite all weekend.
Vomit on Sunday evening of water.
Adding insult to injury, I'm having my random nausea day again already.
mysterious hives on my abdomen. *still trying to figure out what I would be reacting to, either skin wise or food intake. Hives is a first for me other than allergic reactions to medications.
Severe diarrhea myself.
Real quick....got my results in hand, as expected for myself with no answers.
*I knew going in so suddenly that my results would be skewed due to my prolonged use of supplements and being gluten-lite for almost a full year.
The 'celiac panel' was passed with flying colors.
Gliadin IgA 3.96 (0-15)
Gliadin IgG 2.68 (0-15)
Ttg IgA 1.25 (0-15)
Ttg IgG 1.46 (0-15)
Endomysial IgA <1.10 --"within range" with expected range of '<1.10'
(so I assume I'm under the expected range or right at it)
I was considered normal on the phone for the following, but they are clearly right on the cusp. Had I not been on supplements they would have been below norm.
B12 - 204 (200-982)
RBC - 3.92 (3.80 - 5.10)
HGB - 11.8 (11.5-15.5)
and my Lymphocytes were specifically marked as 'high' at 51.0 (19-48.0)
somehow the VitD wasn't done or not included. I thought we discussed it being done, I'll have to go back over my notes.
Not celiac or gluten related, but it sounds very similar to my reactions to bagged salads.
I have chalked it up to it being the preservative they use to maintain freshness inside the bags that I react so strongly to.
I can chop a head of lettuce or use romaine leaves/spring mixes or what not without any problems. But the bagged 'fresh express' or pre-rinsed ready-to-go type bags will get me everytime. Its the same with most fast-food type packaged salads.