potatopeelingmom
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Hi
My son has Celiac and is anaphylactic to soy. We met with an Immune specialist prior to meeting the GI specialist. The Immune specialist insisted on doing the skin prick testing. My son completedly tested negative. Despite having an anaphylactic reaction to soy 1 week before and again 2 weeks after the testing, the dr. was not able to figure out what he was reacting to. I had to figure it out by elimination after the bouts of anaphylaxis, and continued hives post eating minute amounts of soy.
After we learned from my son's GI specialist that the skin prick allergy testing is useless for food ingested allergies. Skin testing is only useful for environmental allergies.
He also had an episode of DH once. It was confined to his scalp and was slightly itchy and irritated. It did not feel like it burned.
Our GI Specialist has also pointed out that those sensitive or allergic to soy are usually sensitive to dairy as well. We have not attempted a retesting of dairy.
hth,
Monica
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I doubt the skin prick test will give you any clear results. My son had the testing done after his first anaphylaxis and all was negative. He continued to have a second anaphylaxis 3 weeks later.
Then when we saw the GI specialist, he informed us that the skin prick test is waste of time for food ingested allergies/reactions. The skin test is more for airborn allergies.
Hope this helps,
Monica
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Hi all,
We homeschool as well. We have noticed a few that were gluten-free, but I did not pay much attention to it until my son started to have gut symptoms.
I diagnosed him myself, after all different types of milk trial, dairy free and then severe illness with diagnosis of Kawasaki Disease, followed a few months later with anaphylaxis. Then at the same time of his second anaphylaxis episode he basically stopped eating due to continuing painful stomach cramps and diarrhea. During our visit in emerg. (due to anaphylaxis) we finally had a Dr. listen to my questioning the root cause of all his recent illnesses combined. My son was already seeing immunology, cardiology and our family Dr. The emerg. Dr. was the only one who told me that likely I would not find out the root cause in the conventional medical world. However, she did book us to a new Immunolgist and a G. I. specialist (for the first time). But the GI appointment was not until 2 1/2 months later.
This caused me to continue searching... I found out that in Canada one can buy a finger poke Celiac Test Kit. I bought and tested both my son and myself. We were negative. However, then we immediately went on a 20 ppm. gluten free diet, with some slight "C.C.ing" as I was still learning. My son was substantually better within 3 days.
When we finally met the GI. and he heard my son's history, he immediately agreed that he has Celiac and lectured him to never eat gluten again. You could not force my son to eat a bagel or anything else with gluten. He knows the pain it causes.
I think because we are in the homeschool world... I was able to closely watch my son's symptoms and take the time to meticulously prepare foods for him. We have made our household gluten-free (as well as food colour, pesticide, preservative, dairy and soy free), which has made the whole family feel a lot better. I'm so glad I've had the ability to figure this out.
I, as a child, grew up with horrific headaches/migranes that would send me to bed for two days, and then a diagnosis of Ulcerative Colitis at age 17, caused me to lose my colon a few years later. I believe now, that I had Celiac all along, but never once did anyone in the medical world or other, mention the possiblity of a need to remove any foods from my diet.
I believe I experienced everything I did, in order to cause me to watch my son more closely. I told him from very young to be aware of how his body felt and to tell us if he developed stomach cramps etc., which he did.
Monica
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Hi Jack,
Flour in the air take 2 days to settle. I think you are getting cross contaminated, at the school cafeteria and home.
Perhaps you could speak to your mom about setting up the kitchen, so one area is completely gluten-free and she could limit her meals to non-complete gluten ones. There are so many pizza restarants. Perhaps she could go out and have pizza while out of the house. Tinkiyada and Gogo Quinoa make delicious pastas the whole family can eat. Living without has wonderful recipes that could help your mom make gluten-free pizza instead.
I really believe that getting CC'ed with gluten can change your mood and make you feel ill.
I hope you can work out a happy medium with your mom.
Take care,
Monica
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Hi... I wrote my original post in a very confusing way.
She started diarrhea and throwing up on Saturday. On Wednesday we went to the doctor for her 18 month checkup. Due to failure to thrive since 9 months he had her go for blood tests. During that appointment he asked about celiacs in the family (I think the diarrhea and throwing up may have been what triggered it for him) and that is one of the blood tests she had. Yesterday (Thursday afternoon) I called the doctor and talked to him about the fact that she'd had so much diarrhea. He said that it was fine. He had checked her for dehydration and he said just keep going. He explained the signs for dehydration (no pee, dry mouth, sunken eyes). She still didn't have any of that.
Wednesday night my inlaws bought a bunch of bottles of pedialyte for her and she drank alot of it Wed. night and all day Thursday. UPDATE for this morning... she seems to have alot more energy and her poop this morning looked more like poop and less like diarrhea (still not great but alot better).
I will call them at 10:30 am to see if they have an update on the celiac's test. When I talked to him yesterday afternoon he had all other results (all great) except celiacs. He thought it would be a little longer. I think it will actually be Monday before I get results. UGH!!! I feel like other things have gone down hill - like she'd been getting better about signing to communicate and now her signs are all confused. I don't know if I'm overreacting since her sickness is actually getting better.
QUESTION What do I do if the test comes back negative??? I was kinda getting alot of the wheat out over the last two weeks (although not perfect) and I know she needs wheat to get a positive. My husband will never accept keeping her wheat free unless we get a test result. He will never go for any invasive test like a scope.
I've met a mom at my local Celiac group, who described her son's symptoms very similar to your daughter. She almost lost her son due to the advanced dehydration.
She had to insist he was scoped immediately at our local Children's hospital, even after emergency was sending her home dispite his worsening condition. She knew someone who worked at the hospital who was able to get her an appointment with the GI specialist.
I think you need to take action for your daughter as well. She sounds like she is at her limit with Gluten and she needs to get off it asap. So if you need the testing get it done now. Or your family members will have to accept that she is feeling better off gluten. I would leave the vomit and diarrhea for your husband to see for himself.
My son was 11 when his system shut down and would not allow anymore gluten. Mind you he was not a young child, but he still was in a great deal of pain and could not stay far from a toilet as well. This went on for two weeks. I stopped gluten before our GI appointment. He was feeling much better within 3 days and was able to finally start eating again. By the time we saw the GI specialist 3 months later, I brought in a chronilogical history of his symptoms. The Dr. totally agreed with us that he has Celiac and lectured or son to never eat gluten again. He sees this Dr. every 6 months now.
Good luck. I hope you get some answers soon.
Monica
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DD is 2 now and just doesn't seem as healthy as she should. We went to a chiropractor for addvice, she suggested vitamins (which she sells), a referral for some sort of biofeedback or biorhythm and adjustments (not comfortable with that). I agree with the vitamins, especially Bs. What vitamins do you use? Also what brand? I give her Swansons Childrens multivitamin, 250 mg of Vit C and Swansons childrens probiotics as needed.
I find Genestra has been the best for us. We take them separately, not a multi. My son needs to avoid soy as well.
Also, we use Natren for probiotics and Carlson for fish oils.
Monica
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I'm not sure why you would need a biopsy, if you already know he is positive from the bloodwork? You do have the right to refuse it, unless you need the positive biopsy for insurance purposes?
About the potential IV and/or further bloodwork. In Canada, one can by a cream over the counter that helps numb the skin before needle sticks. It is called Emla. I'm sure there are similar products in the US.
My son had a hospitalization that required lots of IV's. He has become fearful of needles, so we use Emla to numb the skin and ensure he drinks lots of fluids before the tests. If your child is NPO they won't allow the fluids, but the Emla would take the edge off greatly. You will just need to consult with the person inserting the needle about location for applying the cream.
Good luck,
Monica
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Also meant to answer your second question. As far as I know there is not enough research showing that 20 ppm is safe in the long term diet. The reason for 20 ppm standard in other countries is that it was the most sensitve test they had at the time. The testing is very expensive for companies to do from what I hear. Something tested at 20 ppm could have zero gltuen in it, but there is no test sensitive enough (yet) to test for zero gluten. I go for companies that have dedicated gluten-free processing equipment AND test to be safest. But there are also many mainstream products that I trust that are processed on dedicated equipment. Misison corn tortillas for example are processed on equipment that only processes corn so the chance of cc from their wheat tortillas is almost nil. I have been eating them regularly and never had a problem.
A product tested at 20 ppm does have traces of gluten. The Elisa testing can determine 10 ppm or less and 5 ppm or less. 5 ppm is the highest (lowest) rating at present, so these products can actually be zero to 5 ppm.
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That's disappointing. I use Spectrum olive oil exclusively. Everytime we fry foods we feel all bloated. That must be it.
Have you figured out an olive oil that is gluten-free yet?
Monica
I know what you mean.
I was getting sick over and over again and finally figured out it was a contaminated bottle of oil from Spectrum. They process wheat germ oil on the same line as all the rest of their oils. Argh. -
Hi
I have a son who has had KD one and 1/2 years ago. He was 10. Very typical with all the signs and symptoms. It took 3 pediatricians and one GP to diagnose. The final Pediatrician was the most suspicious and spent more time organizing bloodwork and considering what the symptoms were. We were rushed to emerg on day 10 finally. Treated with IVIG and HD aspirin. No heart changes, thank goodness. But symptoms of Celiac were there all along. During the hospitalization, we spoke to the Dr. of what we suspected were food allergies.
Post hospitalization for KD, was a trying time. My son was exhausted and weak. He experienced joint pain constantly, also wheezing and hives, which then became anaphylaxis X 2. The second time we met an amazing Dr. who believed us about the food allergies and pointed out to me that we may not receive diagnosis from the conventional medical system. However, she finally booked him to a GI specialist, which is turn was booked for 3 months later. In the meantime, my son had such bad abdomenal pain, that he stopped eating. I was desperate... so we tried gluten-free. He was feeling better within 3 days. In 3 months, we kept notes and presented them to the GI specialist. He agreed that I had diagnosed my son and that he indeed has Celiac Disease.
Since then, we have remained dairy and gluten-free, but recently we went soy free. The hives and wheezing have stopped completely.
Please post again if you are still on this forum...to let us know how your children are years later after a diagnosis of KD following with Celiac.
Monica
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My daughter is 13 and we just were diagnosed this month. She was feeling better after going Gluten Free but she is getting new symptoms like the Asthma she was diagnosed with today. She is now suffering from knee pain. I'm not sure what to do myself. I know she is Vitamin D deficient as of today and I am hoping this is the cause of her current problems, but I really don't know. I can tell you my daughter has had many fractures in the past. Please post what you come up with.
Hi Marlie and all,
I find your daughter's history very interesting. My son was finally diagnosed with Celiac last year. He is now 12. He has had 3 fractures... femur at age 2, tibia/fibula at age 5, and toe last summer. Calcium is a huge requirement for Celiac's esp. children that have not completed growing their bones. Also, vit D. We see a Naturopath for vitamin supplements and direction, but my son's GI specialist told me that I could not give him too much calcium.
My son was also wheezy... I avoided him being diagnosed for asthma as I did not want him to take puffers and steroids. Instead he was taking some homeopathy and using Respiractin as needed. But, a few months ago we realized that he was getting his hives from trace amounts of soy in Almond Breeze. We stopped all sources of soy in his diet.... and not only did all the hives stop, but he completely stopped wheezing. He has been wheezing for the last two years. Its amazing. No Doctor or even our Naturopath told us to stop soy. We had to figure it out ourselves.
Take care,
Monica
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Hi Alex,
I hope your little girl is feeling better, but if not I think you need to ensure she sees a Pediatric Gastroenterologist. Bleeding could be indicative of something other than Celiac. She could have Ulcerative Colitis or something else (the root cause could be Celiac however). If it is Ulcerative Colitis it needs to be brought under control. I agree with others that have written to ensure she is gluten, dairy and possibily soy free for awhile.
Good luck,
Monica
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Thanks guys...
I'll see if I can order them up to Canada.
Or maybe I'll have to take a trip to California. :-)
We have been using Eden and washing them. I think we are be CC'ed still.
Take care,
Monica
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>>>Regarding asthma and dairy - is it all dairy, or just lactose or some other part of the milk that is the problem typically with asthma, does anyone know?<<<
Hi Stacy and all,
My son was wheezing badly everyday. We were treating it with homeopathy, without complete success.
We eliminated all sources of soy a few months ago. He has completely stopped wheezing, with no further need for the homeopathy.
I have learned that many people with Celiac disease and/or asthma are also sensitive to soy.
Good luck.
Monica
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Hi all,
I am having difficulty sourcing out a company that makes dried beans that does not cross-contaminate with packaging. Have you located any good dried bean/legume companies?
TIA,
Monica
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I thought it might be nice to have a brief roll call of sensitivity, as it were. If a product is recommended, or recommended against, it makes it so much easier to know how that can relate to my own life if I know whether the person posting is about the same level of sensitivity as me, or more, or less, if that makes sense? Thought it might help everyone else the same way.
Soooo...
My daughter seems to be able to eat somewhere between 5ppm-10ppm, at a guess. Although how that translates on a day to day basis, I'm not really sure. If she eats products that are tested to 5ppm or less, she's usually okay if she only has one serving. The brand products that are <10ppm sometimes she's okay with, sometimes not, so we're not really certain where the exact cutoff is.
Me, best guess is that I react to less than 5ppm. The few times I've found a product that was tested at 5ppm or less, and didn't contain my allergic foods, I still got a gluten reaction. Still investigating, but that's what it's looking like so far.
Anyone else wanna jump in and share their own? If you don't know, probably brands that you can eat would do fine, yeah? Like, Udi's tests to 10ppm or less, but Pamela's to 5ppm or less, for example.
My son and I both react to 10 ppm or higher. I am very picky about which companies we purchase from. It has to be manufactured in their own "wheat free" factory and test at the lowest level. I purchased a vita mix with the dry bucket and now make my own Lundburg rice flours. Also El Peto is good for the other flours.
Take care,
Monica
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Hi everyone,
I'm self-diagnosed as gluten-intolerant but am pretty sure I have full-blown celiac based on my symptoms. I was never tested because I stopped eating gluten as a "let's see what happens" and couldn't bring myself to go back after many positive, drastic changes took place. My issues flared up very badly right after a couple of stressful years. One of the most stressful things that occurred was that our then two-year-old son Jackson was hospitalized for Kawasaki Disease, which is another auto-immune disease of as-of-yet unknown origin. He was treated and discharged with no complications. That was about 18 months ago.
A few months before it happened, Jackson had to have his four top front teeth removed due to decay. We have two older boys as well and had not seen this type of unexplained decay before. Now I'm starting to wonder if this was the beginning of an autoimmune problem for him. In the last few week, Jack has had a constant runny nose, an intermittent sore stomach, lots of gas, and less of an appetite than he used to (although he's still eating). He sometimes complains of pain in his legs and arms, or a headache. He's moodier, more anxious and more tired than usual.
When I went gluten-free in October 2010, we took all the kids off gluten as well for about a month to see if there were any major changes. There were none - but they never had symptoms to begin with - so we started feeding them a typical diet again. It's only since then that Jack has started having these symptoms.
So, my questions are:
1. Does anyone have experience with TWO or more autoimmune diseases in their kids or in themselves? My research so far says this often happens, but I'd like to hear some firsthand experiences
2. Could removing gluten from his diet and re-intorducing it bring on these symptoms?
We're obviously going to get him tested (I won't make the same mistake twice - I think I should have been tested first, too!), but I'm just looking for information/support as we go through this.
Thank you!
Amanda
Hi Amanda,
I've just joined the forum. Your post totally caught my attention. I completely believe that your son and possibly yourself have Celiac.
I will try to tell you my story quickly as it is long.... I was diagnosed with Ulcerative Colitis, when I was 17 many years ago. I ended up having my large intestine removed in my early 30's. Fast forward to 14 years later. I have one son, who I have observed for possible gut symptoms due to my history. At about 9 years of age, he started to develop gut symptoms. We thought he was allergic to milk, so we eliminated milk in the household. Symptoms improved, but not perfect. Then, when he was 10, suddenly classic Kawasaki Disease. He was very sick. Although he was classic, it took 4 Dr.s and much persistence to finally have him diagnosed and treated. Thankfully, he has no heart aneurysms. But after a few months, his gut symptoms were continuing, until finally his gut had enough and he developed non-stop pain, diarrhea and would not eat. During this time he suddenly had anaphylaxis to soy and was admitted to emerg. The Dr. in emerg listened to me about his other symptoms and finally booked him to see a GI specialist. He has definite Celiac. Him and I both went gluten-free and within days he was feeling much better. I feel much better on the diet too. I imagine its what I had all along and most likely it lead to me developing Ulcerative Colitis. We did not actually do the blood tests first as we started the diet first, but looking at my son's health history, his Dr. is 100% sure he has the disease. He will remain gluten-free for life. He does not ever want to go thru anything like the Kawasaki's again.
Best wishes for you and your family.
Monica
Vertigo After Going Gluten Free?
in Coping with Celiac Disease
Posted
It's likely Benign Positional Vertigo. An ENT specialist can confirm it for you. Mine went away after going gluten-free. When you are experiencing it, sitting at the side of your bed and flipping yourself back and forth sideways will induce it, but will also cause your ear to settle down and it will diminish. I also find it is important to keep your ears dry. Make sure you dry them well after showering.
Also, in regards to the later post about dizziness with standing up. Usually that is due to dehydration and therefore your B/P drops a bit when you stand up. Getting drinking some hydrating fluids.
Good luck sorting out the dizziness.
Monica