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celiac3270

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astyanax Rookie

hey, i'm carolyn, from nj, i was diagnosed in 1998 through a blood test and then an endoscopy. i was a freshman in college at the time and it sucked but now it's pretty much ok except for traveling and dealing with other people giving me crap for it.

interesting side note: my endoscopy pics were so evident of what coeliac looks like that my doctor asked my permission to use them as an example of what coeliac looks like (i of course said yes)

i'm so excited to have found this place! it's nice to finally read other people going through what i am.

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rattaway Newbie

Hello fellow Celiacs! :lol: I am a 24 yr. old stay at home mother of two daughters ages 6 and 4. Both of them including myself and my husband are all self dxd Celiacs. I was a crazy wife when we first married. :P I was always paranoid that his mom was using her and my husbands celiac stuff to make my life harder. I was showing all of the symptoms, chronic diarrhea since I could remember and mood swings is an understatement. My husband put up with a lot. When our oldest was two, she had her first migraine. She had always had runny diapers, but being a new mom, I didn't think it was abnormal for babies. The migraine really freaked me out. I took her off gluten so that I wouldn't risk having her go through the pain of the migraine agian. When our other daughter came along, she and her sister got to the point eventually where they were always asking, "mommy can I have a bite of yours?" Of course I was still eating gluten so I would just say " No honey, it has wheat in it and you might get sick" I eventually started hating that I couldn't share my food with them. So I went gluten-free to make life easier on our girls. Low and Behold, my symptoms of diarrhea and oh, a skin rash, and also the mood swings disappeared!!! I couldn't believe it the first time I went to the bathroom and actually had a normal BM. I am sorry to post that and it is kind of embarrassing, but I know that a lot of you understand what I mean. I have been gluten-free for about 3 yrs. now and life is much easier and especially now that all of us are gluten-free. We are active in our church(non denominational, but like Calvary churches I guess). My husband goes duck and goose hunting with our yellow lab Summit. They go hunting with our pastor who was also my husbands soccer coach. I love to read and paint, as well as go horse back riding. We are raising horses and kids and have been trying to have more children, but I have had four miscarriages in the past nine months. No answers. I am considering a modeling career and have the support of my husband but a couple of our Christian friends say that it sends a bad message out to other Christians. I am gonna keep praying about it and see what the Man upstairs says :lol: Any one interested in commenting? My husband and I got married at the age of 18 and have been married for 6 1/2 yrs. now. He is awesome. I don't know what else to say, except that I love to hear from fellow celiacs and other celiac moms. Anyone want to email? celiac3270 you can't be only 13. You are very articulate and I thougth you were an adult all this time. Thanks for getting this started.

Love, Rian

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kalo Rookie

Hi Rian. Welcome to the group (and anyone else I missed). That is an incredible story. So glad you found out at such a young age instead of at 55 like some of us. This is a great group. I too am a Christian and personally I wouldn't go into modeling. I'm sure the Lord will show you through His word what to do with your life. That's neat about your husband and hunting. I'm just learning about all this stuff and would love to deer hunt someday. Sounds like you've got a good support team. So your husband is gluten-free as well? That sure makes it easier. Take care.

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burdee Enthusiast

Hi Rian:

Although I had celiac symptoms all my life, I only recently learned those were celiac related. I have been married twice and NEVER conceived. I also had long periods of amenorrhea. One lasted 10 years after being on b/c pills for a previous 8 years. So I assumed the pill suppressed menstruation, until I learned celiacs have problems with amenorrhea and infertility.

I'm not sure why you want to pursue a career in modeling with your busy life with kids and horses, but listen to your heart. I'm glad to hear you have your husband's support on that idea, but also encourage you to seek God's guidance. HOWEVER, I don't agree with your Christian friends who say modelling sends a 'bad message' to other Christians. Just because they are Christians, that doesn't necessarily mean they know more than YOU about God's will for YOUR life. Somebody has to model clothes. Perhaps God put the desire to become a model in your heart so that you, as a Christian, could exemplify Christian values in a profession which sometimes includes unChristian behavior. I prefer to call myself a follower of Christ, rather than a 'Christian', because so many so-called Christians judge other Christians and dictate rigid rules in a very ungracious, unChristlike way. <_< Above all, my Christian faith taught me GRACE to accept others and reflectively respond to their ideas, rather than dictate legalistic rules about how others should behave.

BTW what media do you use to paint? I did watercolor painting for about 20 years (also sold them in arts & craft fairs, galleries, juried shows and special orders). I hope to eventually get back to painting without needing to paint what "sells". ;) I'll send you a PM with my email address if you would like to correspond. :)

BURDEE

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miup2l8 Newbie

Hello, everyone - its so nice to meet all of you :D !

I am new to the "Celiac World" and this site although I have suffered with this problem for most of my life. Dr's have dismissed my symptoms in the past, stating that its probably due to stress or nerves or "in my head". And to be honest, I have heard those explanations for so long that in the past year or so, I've been berating myself for "allowing" another episode to happen.

I have not been diagnosed yet but have a apppointment in September to see a gastroenterologist who specializes in Celiac disease. My check-up last year with a "gastro" dr left me totally frustrated as he said "Well, you're not losing weight so I wouldn't worry about it too much. Just use Immodium when you have another attack".

Actually, I ran acrossinformation about celiac disease quite by accident! I quit smoking three years ago and that seemed to trigger something in my system as the diarrhea, bloating, gas, overwhelming fatigue, etc became relentless. These are all things that I've experienced off and on during my lifetime but never to the point where I couldn't leave the house before. So I tried eliminating foods to see if it was some sort of allergy and when my granddaughter (whom I raise) came home one day and said she was never going to eat another piece of meat, I started looking into a vegetarian diet so she could get the proper amount of protein. I loved the diet so much that I became a "veggie" too. And this change, at first, was great! I had not felt so good in all my life. But, after about 4 months, I ventured out into the veggie world and started adding things to the diet like meat substitutes and health breads, drinks, etc. All of a sudden I became sick again and couldn't figure out why!

Anyhow, recently I was on the internet looking for some vegetarian recipes when I ran across mention of Celiac disease and the more I read, the more I realized that this was what I have been suffering from. And the reason, I was doing well at first on the vegetarian diet was because I was only eating fruits and vegetables. Once I added those other things in, I became sick because those very things are filled with gluten....how ironic!

So to make a long story short ;) , I have tried to stick to gluten-free for the past month and have started feeling so much better that I hardly recognize myself. I have energy to burn and have lost 2 dress sizes in the past month - I have always had trouble losing weight so this was a bonus to being gluten free!

By the way, I'll turn 60 in October, have raised three daughters on my own, work full time and am raising my 17 year old granddaughter. Two of my daughters have many of my symptoms, my sister has severe joint pain, my mother is anemic and has osteoporisis. I suffered three miscarriages during my childbearing years and have suffered from severed depression off and on for most of adulthood. One of my daughters is manic depressive. Funny how it all ties together now that I read the Celiac symptoms!

Anyhow, I am so glad this site and al you wonderful people are here because I don't have a support group anywhere in the area so its nice to listen to how well all of you are doing. And to know that its "not in my head"!

I would have never guessed that celiac3270 was so young.

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XoHeatherxO Rookie

Rian...my comment on modeling from my own experiences is that it can be very uplifting or very demeaning. However, it has helped me a lot to realize numerous things about myself and I feel that I have helped others to build there confidence by looking at someone realistic, and being a real person and a model to the people in my life.....but that one is up to you! <3-Heather

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Thomas Apprentice

Nice to meet all of you.

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celiac3270 Collaborator
I don't know what else to say, except that I love to hear from fellow celiacs and other celiac moms. Anyone want to email? celiac3270 you can't be only 13. You are very articulate and I thougth you were an adult all this time. Thanks for getting this started.

Well, physically I'm thirteen (and a half :lol: ), but I've never really spoken or acted like a thirteen year-old.....thank you for the compliment :D.

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  • 1 year later...
paw Apprentice

I know this is a REALLY old thread, but I have been reading backwards through the website to learn and this one was so interesting I wanted the newer members to have a chance to see it too. :)

I am not diagnosed yet. I am still working on that but this has been a great place to learn about Celiac Disease, the diet and how to get on with life and feel better.

Thanks to all who shared stories, recipes and just supported each other.

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skoki-mom Explorer

Ok, here's my bio. I'm Lori, I'm 36, and I think the fact that I have celiac disease is probably the least interesting thing about me! I have never been sick with celiac disease, kind of a long story about my Dx that most of you have heard already. Anyhow, I am separated now for about a year and a half, hoping to be divorced soon. I have 2 fabulous daughters ages 7 and 5. They live half time with me and half time with their dad. I have one sister who also has celiac disease. My kids and parents do not have celiac disease. I have been a neonatal nurse for 14 years, I love my work. It is a great place to work most of the time, helping babies get well, but the lows there (like when a baby dies) are really low. Luckily, it doesn't happen very often. I'm a Christian, I go to church regularily. I'm proud to be a Canadian, I have some Cree blood in me but mostly I am Scottish in ancestory. I like to ski, swim, take my kids places like the zoo, and do crafts like cross-stitch and scrapbooking. I love the mountains and I like to take my kids camping. I have a lot of terrific friends and co-workers that have helped make my transition to the gluten-free diet much eaiser. I've been dating a terrific guy for about 6 months now and he is also very supportive and just wants me to be healthy. That pretty much sums it up!

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Guest gfinnebraska

Since this thread has started again... I will add mine! My name is Kimberly and I am 42. Happily married for 21 years. I have two bio sons, 20 & 19, and one adopted daughter, 8. I work full time for a computer company. In my "spare" time (like I have any ;) ) I enjoy remodeling, camping, gardening, knitting, and watching my son play football. My husband works at a nuclear power plant, and my two sons are in college. I found out I couldn't eat wheat back in 1991, but didn't realize I had celiac until 2002. I couldn't figure out why I would get so sick after making an item out of barley!! Now I just think... DUH!! :) As far as I know, I am the only one in my family that has celiac disease. There are those I wish would get tested, but that is another story! :( I guess I need to include my dog in this bio... she is a Westie named Abbie, and is 9 mos. old. She is a joy, but also a handful!! We are a Christian family (Pentecostal) and are involved in our church as well. I am always open to receiving PM from anyone on here... and enjoy getting to know each of you! :)

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NYCisTHEplaceTObe Rookie

well, my name is Amy, i am a junior in college at montclair state in montclair, nj. i was born in ny but have basically lived all of my life in nj. all my friends tease me b/c i am definetly NOT a jersey girl lol. i love it but everyone i love is in ny and that is where i need to be. i LOVE the east coast but have considered following in my mother's footsteps and spending some time in CA. we visited san fran this summer and i fell in love with it, beautiful city. i just love it out this way because i love winter (yea i know i'm weird) and the snow and thanksgiving and christmas are my favorite holidays, it really brings my spirits up just listening to some holiday music! i work with kids who have autism and developmental delays, and i love it. i think it is amazing to see how special they are and how much progress they make and they are so sweet. i was diagnosed with a seizure disorder when i was 6 and had a BAD case of mono at age 12, which triggered all of my symptoms. i havn't been officially diagnosed with celiac disease (i am just sick of going to doctors!) so i am going to see if i respond to the diet and if i do that is good enough for me! i have one younger brother who is 18 and a great mom and dad. i also have a huge family with lots of cousins and aunts and uncles. sadly lost my grandfather last year and i am still devastated by that :(

ok, anyway thats pretty much everything i guess, i don't want to ramble too much!

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dlp252 Apprentice

I'll also take this opportunity to say hello. I've been lurking for a couple of weeks. I found this site through a co-worker who is Celiac diagnosed. I've suffered for years with digestive, tummy and bowel problems and in the last 3 years, severe sinus problems which have lead to sinus infections about every six weeks.

I worked with a wonderful ENT/Allergist (now retired) who thought at first it was just my allergies, but after so long, we started discussing alternative reasons for so many infections, and just generally feeling crummy. We thought candida or maybe low thyroid (I have some classic signs of it even though blood tests at my annual exam with GP were normal), and possibly diet (I was also tested for food allergies, but only had mild reaction to 4 foods). Finally, about this time last year I became very sick with a stubborn sinus infection that wouldn't go away.

We ended up switching antibiotics and discussed food sensitivities. He suggested I try a rotation diet. So, I went on an anti-candida/anti-yeast diet rotation diet (which coincidentially was pratically gluten-free), and before that had a lower carb diet (also low on gluten) that I had been on for around a year. I felt wonderful for 4 whole months--that was a record--although my nasal congestion did not totally go away (wasn't careful about glutenous foods).

What got me started thinking it might be gluten-related was that at the 4-month mark (August 2005) I took a vacation, where I started getting careless about what I ate, eating bread, pasta, etc. I was bloated and miserable, but couldn't seem to stop myself. When I got back from the cruise, I started my rotation diet again, and again felt good once more losing the weight (about 10 pounds) I had gained on the cruise...but I still had that desire to eat toast, lol, and did so.

Then, at the beginning of October I got a very bad case of strep throat, which led to an ear infection and then a sinus infection which I am still trying to get rid of. I decided to look up celiac symptoms, then remembered my co-worker who was able to direct me here and to a few other sites.

I have started my rotation diet once more (just a couple of days ago), and surprisingly only had to eliminate 3 items--rye, teff and oats to fit the gluten-free lifestyle. I was eating one of those every 4 days which is probably why my symptoms didn't go away completely. This time I'll be reading labels much more thoroughly! :D

So, I'm sorry that was so long, but I'm excited to finally possibly have found a solution to years of discomfort and pain and sheer exhaustion.

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Lois23 Newbie

Hi my name is Lois I am 22 yrs old and I was diagnosed with celiac on my birthday 11/26/01. I am from NH born in Boston Mass. I moved to SC In 2000 with my parents. I own a house and have 2 roommates. I am an office manager for a family owned buisness. I love to swing dance and ski. I am Irish, English, Finish, and a little mimac indian a weird mix :) My Mom also has celiac.

They have already come so far since I was diagnosed there is so much more help out there now and more food.

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floridanative Community Regular

I very much like this topic. My name is Tiffany and I'm not the Tiffany that is a great cook and shares all her great recipes. :P Thanks by the way Tiffany for doing that. Many Celiacs will enjoy their holiday feasts this year because of you I'm sure.

Live in metro Atlana now with hubby of 16 years. We are DINKS. I'm from FL but left at 17. All my family is still there which is the way I like it. Just enough space if you know what I mean. I lived in silicon valley for four years when my husband got a job there. Loved San Fran too (30 minutes away) but couldn't afford a house there so we both quit our jobs and moved back to Atlanta - without having jobs here. Probably the gutsiest (crazy?) thing we've ever done/will ever do! Luckily we landed on our feet both working within two months of our arrival back in 1994. I have owned/run my own promotional products business for just over 7 years. Making my own work schedule and not having a boss is a great blessing when you have to run all over town to differnt medical specialists. The drawback being of course, my income isn't steady. I make a lot of my money now (holiday season) for the whole year so I have to save for rainy days (months) when things are slow. Still I wouldn't trade it for anything!

Thanks to everyone on this board. I've learned more here in two months than from any doctor I've seen. And that's FIVE new docs this year. Kudos to all who have been brave enough to share, vent, educate the rest of us that felt like we got hit by a mac truck upon hearing we may have celiac disease. :wub:

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Rusla Enthusiast

This is my golden opportunity to really introduce myself so my real name is Randi-Lee and Some of my friends call me Rusla, as it is my craft name. I am a Pagan and I do not eat children and kill husbands, although I have had some ask me if I could. That would be not good for the karma.

I am 53 and was married for 6 months 33 years ago, I have never remarried, and right now totally single except for my two cats. I have a 33 year old son and two grand children and because the gma word feels so ancient they call me Grandi.

I used to model even up till getting the thyroid and subsequently the gluten problems. I have been in movies, drove taxi's, semi's and trained dogs and horses I have shown dogs, horses and cats. I drove bus for Calgary Transit and now I work in the office.

I write books and poetry and have to pitch one of my books in January to a big NY agent. I live alone with my two best friends Thor the Terrorist and Athena the Goddess Kitty. Thor is devilish and Athena is quiet and cuddly, Athena a rescue cat has manners and Thor one I got from a person has no manners.

Thanks to Lori skoki mom, who suggest I see the Calgary chapter of the Celiac ASSociation, good thing because they told me how I could get the diagnosis instead of going through the biopsy and another blood test. As they truly suspect that what I have on my face and chest is DH and I see the dermatologist at the end of this month, so he can do a skin biopsy on them.

I have a wicked sense of humour and I do many things including leather work, photography, painting and sewing. Where do I find the time...search me.

This list has been great for me finding out information and everyone is so helpful. It is great to know that we don't have to be alone in this world or even feel alone.

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Rachel--24 Collaborator
I like to ski, swim, take my kids places like the zoo, and do crafts like cross-stitch and scrapbooking.

<{POST_SNAPBACK}>

Yay!!! Another scrapbooker. :D

I scrapbook too...I just recently built my dream scrapbook room but of course now that its done I havent really had enuff time to scrapbook. :(

Well...maybe if I got off the computer once in awhile. :rolleyes:

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celiac3270 Collaborator

I forgot about this one.

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fisharefriendsnotfood Apprentice

Hi. My name is Jackie and I'm 14. I live in Toronto, Canada. I love to ski, and dance, and write, and stuff like that.

I've had Celiac since I was 2.

-Jackie

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skoki-mom Explorer
Yay!!! Another scrapbooker.  :D

I scrapbook too...I just recently built my dream scrapbook room but of course now that its done I havent really had enuff time to scrapbook.  :(

Well...maybe if I got off the computer once in awhile.  :rolleyes:

<{POST_SNAPBACK}>

Ummm, well, it would probably be more accurate to say I collect scrapbooking supplies, because I never seem to have time to actually do much scrapbooking. But, it's been a busy year with the divorce, selling the house, moving, blah blah blah, I'm hoping to get back into it soon! So far most of my SB stuff is still upstairs in boxes from the move!

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    • Scott Adams
      It sounds like you've been through a lot with your son's health journey, and it's understandable that you're seeking answers and solutions. Given the complexity of his symptoms and medical history, it might be beneficial to explore a few avenues: Encourage your son to keep a detailed journal of his symptoms, including when they occur, their severity, any triggers or patterns, and how they impact his daily life. This information can be valuable during medical consultations and may help identify correlations or trends. Consider seeking opinions from specialized medical centers or academic hospitals that have multidisciplinary teams specializing in gastrointestinal disorders, especially those related to Celiac disease and Eosinophilic Esophagitis (EOE). These centers often have experts who deal with complex cases and can offer a comprehensive evaluation. Since you've already explored alternative medicine with a nutrition response doctor and a gut detox diet, you may want to consider consulting a functional medicine practitioner. They take a holistic approach to health, looking at underlying causes and imbalances that may contribute to symptoms. Given his low vitamin D levels and other nutritional markers, a thorough nutritional assessment by a registered dietitian or nutritionist specializing in gastrointestinal health could provide insights into any deficiencies or dietary adjustments that might help alleviate symptoms. In addition to routine tests, consider asking about more specialized tests that may not be part of standard screenings. These could include comprehensive stool analyses, food intolerance testing, allergy panels, or advanced imaging studies to assess gut health.
    • Nacina
      Hello, I am a 45 year old mom, who was diagnosed at 29 with Celiac. My now 14 year old son was diagnosed just before his 4th birthday. Needless to say, we are old pros with the diet. He was experiencing some issues, overall health took a major plummet a year ago, and through a bit of work, was diagnosed with EOE. Tried diet alone, but his follow up endoscopy didn't show the improvements his DR. wanted to see, so I tried the medication. (Steroid). He became extremely backed up, and they had him taking Miralax daily. His health plummeted. He is a straight A honor's 8th grader who plays club soccer very competitively. His health continued to decline and at 13 had a colonoscopy and another upper gi. (He was still compacted even with the prep). I finally pulled him off all meds and mira lax, after reading much negative literature online, and put him on a gut detox diet and took him to a nutrition response dr. Finally things have improved. However...over a year later and he is having relapse stomach pain, debilitating stomach pain. Missing a day of school a week, to three this week. This is where we downward spiral with him. He says it doesn't feel the same as when he has gotten backed up before. He is eating prunes, taking his supplements, drinking water...all of the things. Yet, he is feeling horrible. Pain is abdomen, headache, lethargy, diarrhea . He is on a strict gluten dairy, egg free diet. He has adapted well in regards to diet. But I feel like we are missing something here. He is too active, too outgoing to be feeling sick all of the time. His Bilirubin is constantly high. His white blood count always runs slightly low. His vitamin D was very low last time he ran tests, (last month) when he was sick for a week. His celiac markers show negative, so it isn't that. His last endoscopy showed no Eosinaphils in his esophagus.  I have taken him to multiple Ped. Gastro specialists. They run tests, and we get zero answers. I meticulously go through labs, hoping to make some sense and maybe catch something. Any thoughts or ideas would greatly be appreciated. 
    • trents
      But if you have been off of wheat for a period of weeks/months leading up to the testing it will likely turn out to be negative for celiac disease, even if you actually have celiac disease. Given your symptoms when consuming gluten, we certainly understand your reluctance to undergo  the "gluten challenge" before testing but you need to understand that the testing may be a waste of time if you don't. What are you going to do if it is negative for celiac disease? Are you going to go back to merrily eating wheat/barley/rye products while living in pain and destroying your health? You will be in a conundrum. Do I or do I not? And you will likely have a difficult time being consistent with your diet. Celiac disease causes inflammation to the small bowel villous lining when gluten containing grains are consumed. This inflammation produces certain antibodies that can be detected in the blood after they reach a certain level, which takes weeks or months after the onset of the disease. If gluten is stopped or drastically reduced, the inflammation begins to decrease and so do the antibodies. Before long, their low levels are not detectable by testing and the antibody blood tests done for diagnosing celiac disease will be negative. Over time, this inflammation wears down the billions of microscopic, finger-like projections that make up the lining and form the nutrient absorbing layer of the small bowel where all the nutrition in our food is absorbed. As the villi bet worn down, vitamin and mineral deficiencies typically develop because absorption is compromised. An endoscopy with biopsy of the small bowel lining to microscopically examine this damage is usually the second stage of celiac disease diagnosis. However, when people cut out gluten or cut back on it significantly ahead of time before the biopsy is done, the villous lining has already experienced some healing and the microscopic examination may be negative or inconclusive. I'm not trying to tell you what to do I just want you to understand what the consequences of going gluten free ahead of testing are as far as test results go so that you will either not waste your time in having the tests done or will be prepared for negative test results and the impact that will have on your dietary decisions. And, who are these "consultants" you keep talking about and what are their qualifications? You are in the unenviable position that many who joint this forum have found themselves in. Namely, having begun a gluten free diet before getting a proper diagnosis but unwilling to enter into the gluten challenge for valid testing because of the severity of the symptoms it would cause them.
    • Fluka66
      Thank you very much for your reply. I hadn't heard of celiac disease but began to notice a pattern of pain. I've been on the floor more than once with agonising pain but this was always put down to another abdominal problem consequently I've been on a roundabout of backwards and forwards with another consultant for many years. I originally questioned this diagnosis but was assured it was the reason for my pain. Many years later the consultant gave up and I had a new GP. I started to cut out certain food types ,reading packets then really started to cut out wheat and went lactose free. After a month I reintroduced these in one meal and ended screaming in agony the tearing and bloating pain. With this info and a swollen lymph node in my neck I went back to the GP.  I have a referral now . I have also found out that acidic food is causing the terrible pain . My thoughts are this is irritating any ulcers. I'm hoping that after a decade the outlook isn't all bad. My blood test came back with a high marker but I didn't catch what it was. My GP and I have agreed that I won't go back on wheat just for the test due to the pain , my swollen lymph node and blood test results.  Trying to remain calm for the referral and perhaps needed to be more forceful all those years ago but I'm not assertive and consultants can be overwhelming. Many thanks for your reply . Wishing you all the best.
    • Moodiefoodie
      Wow! Fascinating info. Thanks so much! I really appreciate the guidance. @Spacepanther Over the years I have had rheumatologists do full lab work ups on me. They told me they had screened me for arthritis, lupus, and Lyme disease (all negative). In addition to joint pain and stiffness I had swelling in both knees that later moved to my elbow as well.  I also experience stiffness and pain in my neck and shoulders when it flares. I vomited fairly often growing up, but there wasn’t a real pattern to it and I didn’t know it wasn’t normal (thought people caught stomach viruses often).  I don’t usually have stomach symptoms immediately after eating gluten that I notice.  The only other joint condition I know of is fibromyalgia. Good luck! Hope you can get it figured out. I only assumed my joint symptoms were due to the celiac’s because it is under control for the most part on a gluten-free diet.  The rheumatologist also mentioned that some inflammatory/autoimmune diseases can be slow-moving and not detectable until they progress.
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