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doulagrl

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  1. Thank you everyone for your responses so far. Just hearing your stories and knowing we aren't the only ones experiencing this has helped. The additional information we have received has also been very helpful. I had often wondered if there was an additional food sensitivity that was contributing to the problem. I also knew that enzymes played a key role in nutrient digestion and had already purchased a supplement with natural plant enzymes and amino acids to help digestion and maintain a healthy intestinal lining for my son to use after his 6wk challenge was done. So maybe my mommy instincts were on to something there and I will ask the GI doctor about it. Either way I figured if he was showing damage his body could use all the help it could get. I'll let you all know what the test results are and how he reacts when we return him to a gluten free diet. Melody
  2. Unfortunately we are on a National Health Service here which will not pursue further testing until they have a more definitive answer regarding whether or not this is Celiac's. Also our main problem has been that our son has not gained any weight since he was 2.5yrs old and he is now 4+yrs old. We've been told that in some cases the villi simply don't heal even after months on a gluten free diet so the biopsy will show damage not just from this gluten challenge but potentially unhealed damage from before he was gluten free. If that is the case they want to put him on a round of anti-inflamatories and steroids to help his body heal the damage. It was a very difficult decision for us to do this gluten challenge and one we didn't take lightly. We have decided that after the testing is done we will return him to a gluten-free diet and see if the behavioural issues resolve themselves. My doctor has been very supportive in diagnosing me as gluten intolerant without a bioposy and even in the light of negative blood tests which were done too long after I went gluten free. Hopefully my son's doctor will do the same if the test results come back negative but we still feel there are significant improvements after returning him to a gluten-free diet. Its possible that one or both of us are simply gluten intolerant and not actually Celiac. At least now we should be able to see if the growth issues are linked to poor nutrient absorbtion due to intestinal damago or if there is another underlying problem. Melody
  3. Our 4 yr old son has been gluten free since October of last year but we've seen little improvement so we've been referred to Great Ormond Street Children's Hospital in London and the Gastro doctor expressed concern that since there has been no marked improvement in growth and blood tests were done after his ped said to go gluten free (I'm Celiac so it was a natural conclusion) that he may have been misdiagnosed and that there may be another more serious problem that is being ignored because they assume its Celiacs. He has asked us to do a 6wk gluten challenge and then an intestinal bioposy and complete blood work up for both gluten and other food allergies and intolerances. We were told there may be bahavioural changes while he did the gluten challenge if he is actually intolerant. I just assumed he was referring to fatigue related changes but we're seeing other things as well. Has anyone else experienced marked personality changes in a child on a gluten challenge, or perhaps when they accidentally get exposed? Our son is usually a very happy, easy going little boy but since a few days into the gluten challenge its like I have a different child. He suddenly "hates' everything, if we go out he hates being out and wants to be home, if we're at home he hates being at home and wants to go out. He doesn't want to play with his toys and is having fits of temper that leave him so mad he is punching the mattress on his bed. He's never been one to have temper tantrums and is usually very even tempered and plays well on his own. Now he's bored all the time, just wants to lay on the couch and watch TV. I feel like we suddenly went from age 4 to 14 and I'm not ready for a teenager yet Has anyone else had something like this happen? It sounds horrible but I'm hoping he's Celiac and this is just a reaction to the gluten because its almost to much to think that my sweet little boy is changing into this as just part of his natural development. Melody
  4. Thans for the advice. The doctor called and suggested a elimination test as well so DH will listen since it is the Dr's idea not just mine. By the way that cake in your profile pic looks amazing Melody
  5. Hi, We've just had our 3.5 yr old tested for Celiacs. I was tentatively diagnosed during my pregnancy last year but was unable to have the blood test because I had already been gluten free for several months and they couldn't do the endoscopy because I was pregnant and by the time my other son was born I had been gluten free too long for the endoscopy to find anything. I've had huge improvements on the diet and asked to have my son tested. His symptoms: Runny stool Anemia Constant dark circles under the eyes Fatigue Very small for his age (9%) he's 3.5 and still wearing 24month clothes Bloated belly Weak immune system constantly ill with colds He was a big baby until we started solids and gradually slid on the growth percentile His blood test (IGA) was negative and I'm wondering if we should push for an endoscopy or would we be able to see a clear enough change on the diet. My husband wants a "medical" diagnosis not just one based on perceived improvements on a diet. With him being so young would an endoscopy even show enough damage to detect? Thanks for any info Mel
  6. I had Hyperemesis (HG) with my last pregnancy with my son. I agree that no one can understand what it is like without having been there. My mom loaned me her laptop computer to keep me busy but even the blinking of the cursor would send me running to throw up. Our insurance company wouldn't pay for Zofran so I was on Phenegran and Reglan and the whole pregnancy. I was terrified about getting pregnant again (I'm now 29wks along) and knew nothing about gluten intolerance. This pregnancy started the same way. I lost a 10lbs in under 2wks and was trying to deal with an active 2.5yr old while throwing up every 30min. I was talking to a friend about my lifelong battle with poor health and she put two and two together and suggested I go gluten free. We didn't know there could be any connection between HG and ingesting gluten but within 48hrs of stopping the gluten I stopped vomiting. I thought it was just coincidence, that perhaps this pregnancy was different and I had just hit a point where I would stop throwing up. I went almost three months gluten free and saw huge improvements in my health and didn't throw up once the whole time. When I did a brief gluten challenge within 24 hrs to vomiting returned and again stopped as soon as the gluten was cut back out. I"m still learning and one of the first signs when I accidently get "glutened" is I'm head first down the toilet throwing up. I then know to go back over the past 24hrs and try to find out what it was I ate. Everytime there has been something with a hidden gluten ingredient. I also have a friend who also had a very similar health history to mine, including recurring mono infections and severe HG. She spent a lot of her pregnnacy in the hospital was diagnosed with Celiac two years ago. They had decided not to have any more kids and I'm now trying to track her down and let her know that her HG might have been gluten induced and perhaps they can have more kids after all. So I'm very hopeful for you that you will have a healthy pregnancy. I agree with the other ladies that you should wait a while to get pregnant to give your body time to recover and renourish before stressing it with a pregnancy. I'm so sad that we didn't know about this before I got pregnant and the little boy I'm carrying has been diagnosed with a cleft lip by ultrasound and there is a good chance that it was caused by my body's inability to absorb suffiicient Folic Acid during those critical first 12wks. So please to give your baby the best start possible; wait a while to allow your intestines to heal, make sure you are taking a good vitamin supplement and calcium to help build back up your body and make sure you are taking a the higher recommended dose of folic acid so your body is ready when you try to conceive. Mel
  7. Hey Everyone, I went to see a doctor today for the first time about my suspected celiac disease. He was very understanding and after asking a bunch of questions and discussing my health history says my symptoms and then improvement on a gluten free diet are strong indicators of either celiac disease or gluten intolerance. He called a doctor who is a bio-chemist and specialist on blood work and asked him if I could still take the blood test since I had been gluten free for 3 months. The doctor told him to go ahead and order it but it may give a false negative and if that happens then I should consider doing a gluten challenge after I have the baby (I'm 28wks pregnant) and get retested. He said that the test is quite sensitive and may still pick up residual antibodies but if I wanted to improve my chances of a positive test this time around that I should go back on a high gluten diet for the next 2wks and then have the bloodwork done. Since I react so quickly to gluten (within 24hrs) such a short challenge may be enough to boost my levels to get a positive test. My doctor said it was up to me and he would fully understand if I wanted to stay gluten free and have the bloodwork done and that if it came back negative he would be happy to recheck me if I wanted to wait a while and then do a gluten challenge. He also said even if the second test came back negative he would see if he could get me approved for a biopsy or perhaps consider diagnosing me based on me keeping a food diary that showed consistent connections between gluten and my symptoms. Unfortunately all of those options require me going back on gluten for a period of time in order to get an official diagnosis. If I was still living in the US then it wouldn't be worth it but here in England the National Health Service will pay for some of my gluten free food. Things are very tight for us financially and this would be a huge benefit to have this help. I'm considering doing the two week thing in hopes that I can get a positive test result and they will go ahead and give me the prescription for the gluten free food. I would rather do it for two weeks now at this point in my pregnancy than when I'm breastfeeding in case this baby has celiac disease. Doctor also said to bring my 2.5yr old son in a soon as possible for blood tests since he's not on a gluten free diet yet and has a lot of the indicators. So I now have to decide am I willing to be exhausted, constipated and puke for two weeks in the hopes of getting a positive test result. My major symptoms are usually all gone within 72hrs of coming off of gluten so it wouldn't be a long term thing to get over it again. Mel
  8. Hey Everyone, I'm still new to celiac disease and could use some advice. When my son was born he had very bad colic and ezcema. I was breastfeeding him and kept a food log, eliminating one by one the things that seemed to trigger his symptoms. In the end I was down to grilled meats, carrots, peas, apples, bannanas, rice milk and rice cereal. Suddenly the fatigue, gastro symptoms, etc. that I had been battling for years disappeared and I inadvertanltly discovered from this that I had been reacting to gluten. I didn't figure this out until two years later when I heard about Celiac for the first time and realized that the improvement I had seen in my health while I was nursing came from the change in diet. Back to my son, I'm fairly convinced he also has celiac disease and am seeing a doctor today about getting him tested. It never occured to me until today that the symptoms we were dealing with at birth could have been caused by him having celiac disease. My first question is can Ezcma like symptoms be caused by celiac disease? I noticed that if I added in any other cereal other than rice cereal to my diet or ate granola bars etc. that he would break out and the colic would get worse. I didn't know about gluten intolrance back then and thought perhaps he was reacting to the preservatives in the cereals, which the rice cereal I was eating didn't have. As long as I was strict in my diet he was colic/ezcma free and slightly about average on height and weight. Once he started on baby food he started slowly dropping behind on the growth scale and became anemic. By 18months he was considered underweight but the pediatrician said it was probably related to his continued lactose intolerance and to give him a calcium supplement. He is 2.5 now. My second question is we no longer have problems with bad gas/colic and ezcma as long as he stays away from milk but he still exhibits the other symtoms of celiac disease, being underweight, anemic, and lactose intolerant. Could the eczma/colic have been caused by celiac disease in the early months of life but not be being triggered now because he has been on gluten for so long? I know that things that used to not set me off while I was eating gluten all the time now will give me a realy bad reaction after being gluten free for three months. I'm just confused as to whether his early symptoms were being caused by celiac disease or something else. One more question I'm 28wks pregnant and planning to breastfeed again. Obviously I will be continuing gluten free for my own health but if the baby isn't already genetically predisposed to celiac disease am I putting him at risk of developing gluten intolerance simply because he won't be exposed to any gluten for the first six months of his life? Thanks, Melody
  9. I just wanted to relate my personal experience with Rice Krispies. What led me to realize that I couldn't have gluten was the very strict diet I was on while I was breastfeeding after my son was born due to his severe colic. I only realized two years later that I had felt so great not because of the hormonal changes of breastfeeding but because of the strict diet I was on that had inadvertantly eliminated gluten. It was hit or miss and I eliminated anything from my diet that seemed to trigger my son's colic and eczema. I was eating Rice Krispies every day, some times twice a day with rice milk and never felt any ill effects from them. (This was while we were still living in the US). I haven't tried them again since realizing I can't have gluten because I saw they had malt extract in them and after having had some corn flakes which also had malt extract and being realy ill as a result I thought I better stay away, but after what Kellog's has said and what I remember from my previous experience I think I might give them a try. I am a lot more sensitive to gluten now than I was before part of which comes from being pregnant so I'll just have to see. Good luck. It would be nice to be able to walk down the aisle at the grocery store and just pick up something "normal" off the shelf to eat Melody
  10. Thank you everyone for your support I'm going to stay gluten free and I doubt I will ever go back just to get that paper diagnosis. I think my husband's concern for our son is if I put him on a gluten free diet and essentially self-diagnosis him without blood tests that I'm subjecting him to a very restrictive diet for the rest of his childhood and if he chooses to believe me and not go back on gluten to get tested then it will be for the rest of his life. He isn't concerned so much about the nutrition as he knows I will go out of my way to make sure that we are eating healthy. England is a very bread/cake oriented society. We were out this past weekend and places that would have salads in the States like McDonalds, side-walk cafe's etc. had nothing but meat pies, sausages and burgers and I wasn't able to find anything I could eat. He just doesn't want my son to miss out on all the yummy things they eat here on my hunch that gluten is what is causing his problems. I see the doctor on Tuesday about myself and I'm going to push to get a blood test for my son while he is still eating wheat and if it comes back positive then I will test him with a gluten free diet but I won't subject him to the biopsy. Mel
  11. Hey Everyone, I've noticed that the cereals I've been eating even though they don't have wheat in them they do have barley malt extract, another that is supposed to be all oats has wheat fiber added. Are these two items off limits as well? Thanks, Mel
  12. Hey Everyone, Has anyone else had problems with people not accepting that you are gluten intolerant based on improvement on gluten free diet? Even my husband has said, "Well can't you go back on the wheat for 3 months and get the blood test just to be sure" I"m 27wks pregnant, already carrying a child with a cleft lip which could be a result of poor folic acid absorbtion due to intestinal damage, start vomiting 2-3 times a day when I'm on wheat and still am not back up over my pre-pregnancy weight. I have severe constipation, bloating and fatigue when I eat wheat and I feel so much better now that I'm back on a gluten free diet that I never want to go back but he and his family are acting like its all in my head unless I can wave a blood test and biopsy results in front of them to PROVE that I'm gluten intolerant. I"m so frustrated. I've been chronically ill and exhausted since I was 11 and most people wouldn't accept my symptoms because they didn't have a medical diagnosis for what was wrong with me. Turns out years later when I had a bad relapse in my early twenties that they finally diagnosed me with recurrent CMV (one of two viruses that causes Mono) and said that I should have been on bedrest every time I had an outbreak from childhood on and that I was at high risk for Chronic Fatigue Syndrome because the infection had reactivated so many times. Suddenly everyone believed me since I had a piece of paper that said I was sick! Now the only remaining symptoms from my childhood through till now that the CMV doesn't account for can be caused by gluten intolerance and I'm seeing such improvements in my health since going gluten free. I'm trying to get a blood test for my son because my husband doesn't want me to try him with a gluten free diet so I have to keep him on a regular diet until he can be officially diagnosed, even though he is underweight, has loose stools, lactose intolerance and struggles with anemia! I'm just so frustrated and wondered if anyone else had similar experiences with their family if they chose to self-diagnosis based on diet alone. Thanks, Mel
  13. Nausea Question

    Hey Mart, I'm so sorry you had such severe HG with your pregnancy. I was told by my midwife that the diagnosis of HG is made based on the symptoms of severe vomiting but can have a variety of causes, including but not limited to excess HcG. The fact that many of the anti-nausea drugs are actually antihistamines has led some researchers to believe that HG is some people is an allergic type reaction. I know for the 30+ weeks I was vomiting I felt like I had bad case of food poisoning. Some recent studies done at a major university on rats have found that repeated miscarriage can be caused by an immune responder being activated in pregnancy and attacking the lining of the uterus in early pregnancy causing low progesterone and subsequent miscarriage. Since I had to take progesterone for the firsts 12wks with both babies in order to be able to carry the pregnancy we wondered if perhaps my body was simply continuing an immune response to the pregnancy. Now I wonder if the immune response had nothing to do with the baby and was simply a heightened reaction to gluten brought on by the pregnancy which caused my HG symptoms. Interestingly I have a friend who has a very similar health history to me. We both had recurring mono infections and she had HG requiring repeated hospitilization with her pregnancy. Two years later she was diagnosed as a celiac. I just wonder if she was also having a gluten reaction in her pregnancy that caused her to be so ill. I wish someone out there would do some more research on the subject since the various causes of HG are still such a mystery. Even if a small percentage of HG sufferers were actually having a gluten reaction what a difference it would make if the symptoms could be alleviated by simply going gluten free. Melody [i don't know if cutting out gluten stopped your vomiting, but if you truly had hyperemisis gravidarium, I seriously doubt it did. This condition is caused by an excess of HCG (the pregnancy hormone). It usually levels out at or about the beginning of the second trimester, which is where you are at now. If you start to vomit when you eat gluten now, well then it would seem to me that the cause of your vomiting is the gluten and not hyperemisis. I still encourage you, however, to remain gluten-free if you suspect you have Celiac or any other gluten sensitivity.]
  14. Thanks everyone who has responded so far Mel
  15. Hello Everyone, I was just wondering how you found out your child had celiac disease. I'm new to this group and am awaiting testing for myself but now am strongly suspecting my 2.5yr old son has celiac disease as well. He suffered from terrible gas and bloating from birth along with ezcma which was resolved when I eliminated everything from my diet (I was breastfeeding) except unseasoned grilled meat, carrots, peas and rice cereal and milk. He was always right on schedule or a little above on the growth charts until I started him on solid food and began adding things back into my own diet. By 12months he was classed as underweight and is also milk intolerant and struggles with anemia. He has had a major growth spurt about 4months ago but is still small for his age in both height and weight. We just thought that his size and anemia were hereditary because I had the same problems as a child but I'm now suspecting what was hereditary is Celiacs. The pediatrician we had seemed unconcerned because he was reaching his other developmental milestones and was active. He also always has loose stools and food goes through him very quickly, for instance corn will show up in his stools about 6 hours after eating it. I was just wondering how everyone else arrived at the diagnosis of celiac disease with their children and what my next step should be. I'm living in England and because we have a government health system I'm suspecting it will be very difficult to get any type of testing done though I am meeting with a doctor about myself in two weeks. Has anyone simply chosen to go gluten free for their child based strictly on symptoms without a diagnosis through bloodwork or colonoscopy? Thanks for any advice. Melody
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