And some have celiac and don't have one of the two most commonly looked for celiac associated genes. A complete celiac panel and biopsy if you choose to have one are the best way to go if you are looking for a diagnosis. After all testing is done no matter what the results you should give the diet a try if your symptoms seem to be celiac related as false negatives are pretty common.
This is so frustrating, I feel like I'd be happiest with a diagnosis but no way do I want to put all of that back in my body for a test that could come up negative!I am two months into eliminating it from my diet and I have had airboorne reactions, and significant bodily reactions after the elimination, I have had many symptoms that seem to be in a healing of sorts. I just wanted something that could back me up....My daughter had the panel done recentlly and her results were negative but I have not seen them with my eyes, I am awaiting the copy. My son will be tested next! Thank you for explainning it to me...Left wondering why this is all they have for testing, it seems so inaccurate for many! Thanks again, Cathleen
Thank you, Lisa! Funny you say small changes. I have had less night sweats (not totally gone yet), my finger nails are already stronger (did not think I could see a change in my nails in 2 weeks!), and minor improvement in overall 'feel' of hair. Ends are still dry, probably due to lack of vitamins over the years. I will definitely keep watching the small stuff because in the end, those small things add up to lots of relief! THANK YOU for your insight!!
Love Love Love the Small Things!!! Celebrate the small things! Cathleen
Hi! My name is Angie! I would be interested in learning more about the symptoms you've experienced. My 'obvious' symptoms just started back in May 2012, but now looking back, I am thinking I have had less obvious symptoms for years!!! My recent issues in May were bladder-related, but thought it was UTI issues or something. I have now been through countless rounds of bloodwork, CT scans with barium and IV die-contrast, GYN ultrasound, CA-125 bloodwork to test for markers with uterine cancer, visited urologist, OB-GYN, PCP, and then referred to pelvic physical therapy due to immense abdominal tension. I still have pain but cannot determine if mine is bowel, vaginal, or urinary pain. Here is the kicker - I always thought Celiac/gluten sensitivity would bring bouts of diarrhea because the body would try to rid of the poison. I am a very constipated person. Found out that constipation is a BIG symptom for many. Well, my brother is HIGHLY allergic to gluten - never thought I was at-risk because our symptoms are not the same. So......I sought assistance from an integrative doctor. He is doing bloodwork (7 vials, stool sampling and saliva sampling). He is checking for several things (to rule out other issues, too). Like you, I am new to this. I gave up gluten the day after my bloodwork and will get the results tomorrow. I have felt some improvement but not TONS. I know it takes time and CC is always a possibility. I appreciate any info you can offer (or anyone else on this thread!) THANK YOU!!!!!!!
Angela, God Bless You!! Thank you for your reply, I am so sorry you are sick and going through everything that you are going through...I hope you find your answers and your releif! How are you feeling today? Have you received your tests results back yet?
I'm unsure how much of things for me went unnoticed like you in the past, but it was about 5 -5 1/2 years ago that I started feeling sick...I went threw a really stressful break-up with a man who I had pictured marrying who lived with my two oldest kids and I (6 years ago), life moved on, I bought me a dog, quit a very stressful job, started dating, met my husband, got engaged, (seen a few docs not feeling well)found out I was pregnant, got married, had my son... got very, very ill...lost a ton of weight, foggy head, migraine headaches (had never had these), undescriable anxiety, hair loss,(my dog got hit by a car and died) I had confussion, muscle weakness, I had flu like symptoms but wasn't getting the flu....had tests run to check for MS, I had that contrast test done where they look at the functions of things, they said I needed to have my gall bladder removed (actually this test was done days prior to finding out I was pregnant with my son), I kept my gall bladder, I had a mri done on my head to see why I was having all the migraines, they told me there were a few spots that look like they could be associated with hormone problems & causing the headaches, but my regular doctor said that maybe it was MS, so I had tests done for MS (spinal tap), they said those were found normal, my stomach continued to look like I was pregnant (bloating), constipation, vitamin D & Iron I usually test low on... After all of this I prayed that I would get pregnant again because I felt better during the pregnancy then I had in a very very long time...so thats what I sought out, and that is why my daughter Averi is here, I was sick and I needed some refief, the doctors were not finding anything, family & friends kept telling me I needed to eat (I was eating) ... I was literally a crazy person with confusion and anxiety...doctors suggested fibromyalgia a couple of times, kept hearing the words depression...Now do not get me wrong after going through all of this stuff and some financial difficulties, selling of a house, living in a place I wanted nothing to do with, switching schools, jobs, loss of a dog, new husband, a baby....I mean ya I was probally a little depressed but if I know one thing just one...I know my body and I know my body was not right! So I got pregnant, many many things subsided and I started to feel better...I dreaded feeling sick again...I had Averi and she will be two now in October, I started feeling real sick again about 4-6 weeks after she was born, it never got as bad as after my son but there were even diffrent things...so I went to see a hormone specialist, now they said that I had some vitamin defficincies, and that my progesterome was a .5 no where near the normal range so they gave me hormones...basically until the day that I sat down and rocked her I have been awaiting answers...I have lived with all of these things for so long with no answers, that day I started this was a day of hope, and these past 40 some days have been my answers, I am healing! I started doing jumping jacks at night just to test out how many I could do before it hurt, or taking a stroll with my son to find us racing because I could and I wasn't cringing and waiting for the pain to become unbearable...I would and still will eat something and my whole body will tighten up waiting for an ill response, pain...I am still getting used to the idea that it may just be better, hugging my husband kids, letting them sit on my stomach on the floor, or doing crunches...I would avoid all of these before because my stomach used to always feel like it could just pop... after I had Averi I called the doctor one day and told him I thought my spleen was swollen because it hurt so bad, they ran me through a cat scan, and said maybe I should try the fibromyalgia medicine again....no doctor not one has ever suggested to me that it could be food related...
Angela, I hope you find some answers! I know that I am so new to this, and I am learning so much about myself too but please do not hesitate to ask questions or come chat with me! Thank you for your support!
After I was diagnosed I rid the house of all baking/cooking items that had gluten in it or was cross contaminated. I do not allow baking with regular flour at all. I decomtaminated the kitchen and dedicated a small area on the counter that my husband and kids could use for gluten items. The rest of the kitchen is strictly gluten free. All shared family meals are made gluten free because I refuse to cook separate meals. The kids and hubby ate lunch at work and school. For breakfast they ate what they wanted but had strict rules as to only eat at the table and to wash afterwards. There is no double dipping in anything we share. Hubby didn't think it was cost effective to buy double of everything, so he is very careful to not CC things. I bake almost anything immaginable gluten free and noone in the house complains. If there was something particular I couldn't make gluten free or didn't want to, hubby went to the bakery. Both my kids were old enough that they could follow the rules. I immagine with very small children in the house CC could be more of an issue. It's amazing what little hands touch.
Two years later my youngest son was diagnosed with celiac also. Then the following year my oldest son went gluten free too. So now there are three of us in the house gluten free. My husband still has his bread, cereal and a few snacks, but that is it.
If you want an official diagnosis then you would need to go back on gluten for 2-3 months to get the best chance for a positive test. Some people after they go gluten free find it hard to do a gluten challenge and can't weather the reactions. Do what feels right.
Thank you so much for your knowledge and support, it is so good to have someone to talk to and who knows what you are going through! Being a mom of 5 kids is tough, being a mom of 5 kids who needs to be so dietary restrictive is even harder. I suppose I will learn and hopefully it will get easier. My oldest son is 14, diagnosed with PDD (autism spectrum) when he was just 1, I will be having him tested soon, 13 year old step daughter with no concerns on her diet at this time, my 10 year old daughter whom I had blood work done on last week and am anxiouslly waiting the results, I also have a 3 year old son and a 1 1/2year old daughter - these two I may wait for tests on - they did have issues with milk when they were infants...actually all of my children did... No sympathy will come from them, this is true! I need to be the one to change how this kitchen works, let them make there choices outside of the household for now (tests pending) ... I do like the idea of a "little area" for there items. Do you make your own bread, household bread? Can you suggest your favorite go to site for meal ideas?
Thank you again for your support, it is much needed, and very much appreciated!