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Everything posted by houseofboys

  1. I am just now getting around to cleaning out my "poison" flour Tupperware canisters. Would I be able to wash them in the dishwasher and reuse them for gluten free flour mixes? Is it possible that gluten molecules somehow could have embedded themselves in or permeated the plastic and therefore rendered them useless for food storage? They're relatively new (2-5 yrs old) but I'd hate to risk my family's health. Thank you in advance for any help on this matter.
  2. Thank you to all who have taken the time to read this thread and for your advice. I am so thankful that we found this group! It looks like this is going to be a long road ahead, but it is comforting to know where to turn if we have questions or seek information (and it's not to the doctors!).
  3. For the tTg test he had, 0-19 is negative, 20-100 was equivocal, and 100+ positive. We believe that this range was NOT adjusted for age or food intake. We do believe that it would be very hard to get a positive result on any panel test because he refuses to eat food with gluten. When he did eat a gluten containing food, he then wouldn't eat it again for two to three days. DS SUPPOSEDLY saw a pedGE at a university hospital that specializes in celiac (one of the hospitals in the celiac study consortium) and we were soley disappointed in their attitude and his treatment. Although the pediatrics segment is independent from the celiac research center, we figured that there had to be some sort of collaboration seeing that the endoscopy was physically performed in a surgery suite in the celiac centers office by the pedGE. What is disheartening is that this doctor does not seem to have any faith in anything but a positive tTg and positive endoscopy in diagnosing celiac spectrum sensitivities, as you said above. UGH!!!!! We would have had our ds go to a local GE, but the practice does not see children so we had no choice but to go where we could get an appt. My husband will not go gluten-free until he sees the local gastroenterologist and sees what he recommends. For our ds, he is on his 5th day of being gluten-free and we are already noticing several changes - his disposition has improved greatly, his energy levels have increased, he isn't as irritable, and he has asked for and eaten 2nds and 3rds for the first time in his life these past two nights. Today he told me numerous times that he loved me and told my husband how much better he was feeling. It all could be a coincidence, but I am following my heart and gut feelings. This is how my sister discovered her celiac sensitivity and this was at the recommendation of her doctor. We honestly don't think that he has much damage, if at all, but he seems to be very sensitive to gluten and aware of how it makes him feel when he does ingest it. We also feel that a gluten-free diet can't hurt him and is actually linked to better overall health. If he doesn't improve over time or his vomiting and stomach pains reccur, we will definitely seek out another opinion. The pedGE also said that he might just have a sluggish colon but that wouldn't explain the tTg results. We also hesitate to get a clinical diagnosis on his records as we have read that it may preclude him from getting normal rate health and life insurance in the future. With dh having been born with two heart defects we know first hand how a "preexisting condition" can affect life insurance premiums. I am waiting to hear back from our son's pediatrician as to how she suggests us to proceed. We may ask her to do the full celiac panel on all of our kids to see where their levels are but we feel that ds has been put through enough and it may be difficult to find a great doctor that will be able to diagnose him fully. I am sorry that you have had to go through this with your son (as well as countless others, unfortunately), but am happy for you to have found a wonderful physician. Thank you for your helpful advice and good luck with your son!
  4. When the doctor did the endoscopy, he said that he looked for and did not find (supposedly) any abnormalities, structural or visible damage. I will look into it and if ds does not improve over the next few months, we will definitely get another opinion and specifically ask about this condition. As for the reflux meds, the pediatrician tried him on ranit (the generic of Zantac (it has worked better for most of our kids)) which did not work that well. She then switched him to the ppi Prevacid which stopped the spontaneous vomiting and reduced the frequency that he complained of stomach pain. But, he actually ate less and drank more when this medicine took full effect after about a month on it. He was having bouts of constipation switching to diarrhea before this medicine but now is fairly regular (now once/day but it's black and foul!). The pedGE now has me gradually decreasing his Prevacid over the course of the next two weeks as he says that it will cause irreparable damage to his stomach mucosa if he is on this type of medication long term (ie when a person comes off of it, his/her acid producing cells let open open the flood gates, so to speak, and cannot regain control of the acid production). We're hoping that by pairing the gluten-free diet with his reduction in prevacid with work in concert and keep him from vomiting again. We were vehemently opposed to an appetite stimulant and propulsant because they have known cardiac arrest risks. That's why it is frustrating that the doctor would mention this at a previous appt, but not recommend an elimination diet at all. Go figure. Oh, btw, we were wondering if this was normal or indicative of a gluten sensitivity... When ds was on milk of magnesia, his stools became grainy when they loosened up. I had to phsically pick the grains off of his bottom and general diaper area as they would stick to him. When they told me to switch to Fletcher's castoria, the initial bm residue was sandy and again stuck to his bottom. I guess we all are looking at a gluten-free diet, but in the long run, I feel that we will be healther as a result. Thank you all for your replies and suggestions. It is comforting to have such a wonderful resource and support group at our fingertips!
  5. I am a new member and this is my first posting... Our third son (of four, so far) has had poor weight gain (failure to thrive) and low weight for age & height, spontaneous vomiting, constipation, complaining of stomach pain, iron deficient, and the like since he was about four months old. He is 25.8 pounds at about 39" tall and has not gained any weight for the past year although he has grown in height. His pediatrician had been treating him for GERD off and on since birth thinking that the reflux might be causing the problems. All 4 of our boys have had GERD and eczema on and off since birth as well as two with asthma/reactive airway disease. At the first appt with the pediatric gastroenterologist, he seemed aggressive in his approach to find out what was causing ds's discomfort. He thought a sluggish colon or celiac was to blame and had us start a laxative to hopefully clean out his system while he waited for the results of the blood tests. The only celiac test he had performed was the ttg which was "Spot on normal" and the h. pylori was negative too. He did an endoscopy with biopsy the next month after we emailed to say that the laxative wasn't increasing his appetite and was only causing multiple bm's with painful rashes. The endoscopy was "normal" as were the biopsy results. At his follow-up appointment yesterday, I saw over his shoulder that ds's ttg was 20 on a scale of 0-19 negative, 20-100 equivocal, 100+ positive. Total food intake is typically 1/2 slice of whole wheat bread (and an "end/heel" at that!) or equivalent (2-3 triscuts or pretzels) per day. Even with cookies he stops at half a bite. His main caloric intake is the generic pediasure which is certified lactose and gluten-free. He will eat bites (and not more) of cheese but is always craving plain chicken and or steak mixed with nothing. He will not eat any fruits or veggies. We've noticed that if he eats any bread or gluten containing product, he will not eat anything for the next 2 to 3 days. He will also get backed up and require either apple juice or supplemental laxative to get him going. At the appt yesterday, the doc was dismissive about any problems and suggested that we now take him to a speech pathologist to evaluate him for oral or motor problems ??? because there is nothing clinically wrong with him. BTW this is at a major research/teaching university hospital that supposedly has a celiac specialty clinic in house. Actually, this specialty clinic (downstairs from the pedGE) is where the endoscopy was performed. Also, my husband & I voluntarily got tested for celiac (EMA, IgA & IgG Gliadin - not ttg) and our results were processed by the Mayo clinic. Surprisingly, dh had an equivocal IgA Gliadin result of 41 (normal <25, 25-49.9 equivocal, 50+ positive) and I was at normal levels for all (like 2.3). However, I have a sister that is a celiac (not clinically diagnosed but her doc agrees) and all of my first degree relatives have IBS, colitis, or thyroid diseases including myself and all have moderate to severe weight issues. Our family all eats the same diet so there is some validity to even an equivocal result, right? DS's doc dismissed these results and said that the IgA Gliadin test was meaningless and should have been dropped long ago from all labs and that the only reason why labs perform this test is because they are out to make money. Furthermore, he inferred that this test often worries the patient who then seeks further help from a gastroenterologist who then has to do needless endoscopies and biopsies - ie we waste his time. Our internist doesn't agree and has him seeing a local gastroenterologist as he has some of the more neropathic symptoms and extreme fatigue 4-6 hrs after ingesting gluten as well as intermittent abdominal pain and severe lower back pain 2-3 days after ingesting large quantities of gluten. Please note that our family does not eat out very much, I am a sahm who makes most everything from scratch, and we almost always eat strictly whole grain products (ie. pasta, pizza (homemade), bread (some homemade), etc.). My question is this...If ds doesn't eat that much to begin with, let alone eat that much gluten, would a ttg result of 20 in a then 29 month old toddler (the age at the blood test) be considered fairly high? When I asked the doc about taking him to another facility in-state that has a children's feeding program that specializes in kids who won't eat solid foods, he said that they could do that there but didn't recommend it. He just said that kids can grow up eating just one thing and ds's just happens to be pediasure. Should we pursue a "clinical diagnosis" any further? As a little test, we are going gluten-free anyway to see for ourselves if ds improves. We have lost faith in the "specialist" who did not even want to try a gluten-free diet ("it's an unnecessary burden for him"). DS is on day 4 without significant gluten (no gluten at all for 2 days) and tonight ate 2 full slices of a 12" homemade gluten-free pizza! We haven't seen him eat this much in a very long time. He did take one bite and then waited about 15-20 minutes before returning to the table to consume his 2 pieces albeit very slowly. Actually, our two older sons (4 & 6) told me that they actually liked this pizza better than the regular wheat crust pizza I usually make. The one year old, who also shuns bread products and is starting with constipation, ate nearly 2 slices of it too! Thank you for taking the time to read our post. Please let us know if we are, or are not, thinking in the right direction.
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