Writer looking for people with celiac and other autoimmune conditions

[ljgs]

Hello, all. I'm the mother of a celiac sufferer as well as a journalist. I'm doing a story for Gluten Free & More magazine about the link between celiac disease and other autoimmune conditions. I'd love to hear your story, if you're interested in being quoted. Were you diagnosed with celiac and then another condition? How do you manage both or all? Thanks in advance! P.S. I do have permission from the moderators to post here. 

[jeanniemiller]

1 hour ago, ljgs said:

Hello, all. I'm the mother of a celiac sufferer as well as a journalist. I'm doing a story for Gluten Free & More magazine about the link between celiac disease and other autoimmune conditions. I'd love to hear your story, if you're interested in being quoted. Were you diagnosed with celiac and then another condition? How do you manage both or all? Thanks in advance! P.S. I do have permission from the moderators to post here. 

I had lupus and thyroid in my 20's alopecia in my 30's diabetes in my 40's and at 59 Reynard's and vitiligo 59 had gastric bypass but didn't find out till 61 celiac I had polycystic ovaries too  just read there a link with celiac and polycystic my whole family has autoimmune diseases mom aunts cousins children I seem to get more with any kind of bad stress in these 2 years I truly thought I was dying in truth i'm glad a ER doctor told me I was sick not dying this I can manage like the rest of my sickness you can privet message me 

 

[trents]

I have a suggestion for you.

Sit down and develop a list of more detailed, targeted questions you would like to have data on that would provide a framework for people's responses. I feel like your current questions are too vague and too general to be very helpful to people trying to provide input for your writing project or to you trying to distill and organize the material. I think you need to ask people to give specific ages and dates of when their celiac disease and the other autoimmune conditions were diagnosed. Ask them how much time expired between the first perceived onset of symptoms and the official dx of both celiac disease and other other disorders. Ask them how they were diagnosed. Ask them what symptoms led them to seek medical intervention. Have some way of distinguishing between official and unofficial diagnosis of celiac disease and the other associated autoimmune conditions they. If you visit celiac disease forums very long you will discover that people blame everything from hang nails to lumbago on celiac disease without any evidence of association. Ask questions about their diligence in avoiding gluten. You could also provide space for narrative in your questionnaire.

Just some of my own thoughts here. Hope this is helpful. 

[Ennis-TX]

Celiac and Ulcerative Colitis, multiple allerges, with some other nerve and gut damages. Manage mostly with supplements and herbs, along with a diet to avoid trigger foods and stuff I can not digest, mostly paleo with keto/low carb diet with a basis on nut butters, seeds butters/meals, egg whites, leafy greens, avocados, and nut based baked goods. 

[katbalou]

My whole immune system is compromised due to late detection of celiac disease. I have hashimoto's disease, alopecia, gum disease  and multiple food and drug allergies. My kids will bring home a virus and be sick for 2 days, for me it's 2 weeks. I had my heart surgeons PA tell me that due to inflammation in my body from celiac, it probably brought my heart disease to crisis earlier. I had a double bypass at 52 after a heart attack. My oldest son was diagnosed over the winter with type 1 diabetes, the endocrinologist told him it was hereditary - it didn't have to be diabetes per se, but if a family member had celiac or thyroid problems, probably stemmed from that. Feel free to ask questions.

[vickiedotey]

 

 

 

.Hello, I was  diagnosed with Celiac disease  when I  was 59 yrs old.  It was caused by a  traumatic event.  I had suffered over a period of time until my doctor  didn't know what to do.  She  finally  sent me to a gastroenterologist and  it took a blood test to be  diagnosed with Celiac disease.  I was also  given a scope and a colonoscopy.  I went from 125 lbs. down to 94 lbs. I was also diagnosed with  microscopic  colonitis. Which means no seeds or nuts. I have 3 children and I'm not sure as of yet if they will get Celiac disease.  I also can't  have rye or barley .  My mother died at a young age of 38 yrs old.  I don't know who my father was.  It has been really  hard to adjust to being a Celiac,  when the doctor tells you that  you have to  eat gluten-Free and you look at him with the deer in the headlights  look !!!  Reading every label very carefully and with lots of mistakes. Also not knowing  about msg, maltodextrin.  Plus several other ingredients.  It was difficult finding gluten-Free food and having to give up lots of food  that you're so use to eating on a daily basis.

Edited June 12, 2018 by vickiedotey
Mistakes

[Ronnie d]

My name is Ronnie.  I have recently been diagnosed with dermatitis herpetiformis.  My understanding is if you have this autoimmune disorder you automatically have celiac.

I got my diagnosis four years after my symptoms began.i have been through the itching,blistering,and oozing sores.I have also gone through staph infection because of the scratching.

I am 30 days gluten free, and am on 50 mg of dapsone, which is an immediate cure for dermatitis herpetiformis blisters.Dapsone is an antibacterial drug invented at the turn of the century.It was the drug of choice before penicillin.Within 24 hours of my first dose I could feel the blisters easing up.After one week my blisters and all itching were gone.

If I can help you in any way with your article i'll be glad to contribute.you have my permission to print or use any of the above.

 

sincerely,

Ronnie

[Pee Wee Moondog]

I was diagnosed with celiac disease in my early 40s, which as we might imagine was late in the game of Life.  From age 12, and more floridly then from early 20s, I had skin problems on feet and hands -- which was denied diagnosis of dermatitis herpetiformis, told to be the only skin condition associated with gluten sensitive enteropathy. I was diagnosed with keratoderma aka hyperkeratosis.  Big calluses, which split, itched, wept plasma and dangerously enough stayed open for weeks, into months.  An invitation to adventitious infections.  I saw seven Derm doctors, at a major teaching hospital, was rotated through two Chiefs of Staff Dermatology and was told each time: "Your skin problems have nothing to do with your diet." (because although not yet on a gluten-free diet, I'd thought I'd noticed a correlation.)  One Chief of Staff M.D. told me when I insisted there was a correlation -- and that I noticed a similar variant with dairy exposure -- "Frankly, Mr. Moondog, we don't believe you." Why don't you believe me doctor?  "Because  there's nothing in the literature to support this." (* story continued below). The other Chief of Staff MD told me "You keep digging on those wounds, they're going to become infected.  The infection will go to the bone (osteomyelitis) and the treatment for that is amputation!"  But they itch, doctor...here's some urea cream...here's some fluocinonide...here's some Ultravate ointment...don't take too much, don't use often and don't take it more than six months, [at which time you can go back to being a leper?].  Suffice it to say, once I got the gluten and total dairy exclusions sorted out, my skin problems NEARLY healed, to the point I could forego the steroid cream and cowpiss cream...however, I am still sensitized to prolamins, apparently, and react to millet, quinoa, kamut, amaranth, even buh'whee' which is not even a grain but has those pesky prolamins similar to gliadin.  The relief of near-complete skin cracking resolution, but the concern it can happen overnight after a single exposure to an irritant through digestion, keeps me playing rope-a-dope in the boxing ring of gustation.  The eighth Derm doctor my care was transferred to after I fairly shouted at the nonbelieving MD, in front of his two white-faced residents -- "Well put it in the literature doctor, and name the disease after you!" (* above) -- the eighth guy, bless his heart said "How you doing?" I'm pretty much healed, and not using the prescription ointments.  "Oh?"  Yes, I know you-all don't believe me, but my skin disorder is related to diet, and when I'm very careful, my skin clears up.  "Oh I believe you, Mr. Moondog."  You do (boink boink boink!) "Yes, but it doesn't change the treatment we have to offer.  Want a refill of your steroid cream?"  Newp...not now, not never.  and 25 years have elapsed since I declared my experience, the professionals denied it, or manifested indifference.  And helped no one else, I presume, who might have the same deal, for which "the treatment is amputation"  --- wow.  Tales of Brave Ulysses by Cream as my bumper music to exit.

Edited June 12, 2018 by Pee Wee Moondog

[Audio511]

I was initially diagnosed with Grave's Disease at age 39 after 2 years of misdiagnosis with hiatal hernia.  I was treated with radiation and about 4 years later my sister started to notice one of my eyes was looking bigger and more pushed forward than the other.   I went to an opthamologist and told them what my sister had observed and was told there was nothing going on that Dr could see.  I was not convinced so went to my primary care Dr who also said she saw nothing, but "just to humor me" she would send to a new Opthamologist she had heard good things about.  Sure enough, he diagnosed me with Thyroid Eye Disease with accompanying severe dry eye at age 45.  I subsequently found out it is common in people who have had Grave's Disease, especially if it was treated with radiation instead of surgically.  My symptoms included some bulging of the eyes and eyelid retraction.  The eye bulging has mostly resolved but I still have some lid retraction and will likely have the dry eye the rest of my life. 

At about age 53 I started to notice periods of extreme, profound fatigue and muscle/joint pain.  They would last for a few days in the beginning and happen every few months, but started to increase in frequency and duration within a few months.  I went thru  about a year of diagnostics including testing for Multiple Sclerosis and Rheumatoid Arthritis.  Thank goodness the MS tests were negative, but the RA tests were positive (both types).   I started treatment for the RA and went thru about 6-7 different medications including injectables and oral medications.  They all helped some for awhile, but none long term.  I also was starting to have some issues with high liver enzymes so my rheumatologist wanted to be as conservative as possible with what I was taking.  We finally settled on me taking the "old school" treatment for RA which is sulfasalazine.  It keeps me comfortable without being too hard on my liver.  But we also noticed that a lot of my pain seemed to be in my muscles more than my joints.  The Dr did the "pressure point" tests for Fibromyalgia in the office and the indicators were that I also had that.  He told me though, that he doesn't really treat fibromyalgia because he "doesn't know enough about it".   

I  live in an area that only has 1 rheumatologist within 150 miles so I was forced to drive 2 hours to see someone for that.   That Dr had me do a "Gluten tolerance trial" for 30 days while I was seeing him and I saw no difference or any indicators that I had been having any issues with gluten. 

After about 2 years of seeing him about every 6 months I didn't really see any benefit from driving that far so I stopped going to him.   I was diagnosed with Sjogren's and Reynauld's 2 years later at 55.  

About 4 years ago, my husband of 38 years was diagnosed with Myelodysplastic Syndrome, a form of blood cancer,  and required a lot of treatment over a period of about 18 months.  He lost his battle in February of 2017.  In April of that year I went to an Easter celebration at a family member's house and the next day developed what I believe to have been a severe case of food poisoning.  I was in horrible shape for 5 days with the usual symptoms.   After recovering from that, everything seemed back to normal.  I saw my rheumatologist as usual for my every-4-month visit in September of 2017 and had my pre-visit lab work done.  At the visit my liver enzymes were elevated again.  This time he referred me to a gastroenterologist to try to find out why my enzymes kept going up and down. 

The GI Dr's office had me answer a bunch of question before the appointment and ordered their own lab work based on the answers to those questions.   A few days later I got a phone call as I was shopping and was floored when they told me I had Celiac Disease.  I had never noticed anything to indicate that was even a remote possibility.     Of course I immediately started reading everything I could about it and saw a lot about biopsies for diagnosis so I asked about whether that would be done, but was told that the results of the blood test for me was definitive enough that a biopsy was not needed.    I have been on a strict gluten-free diet ever since but since I am a "Silent Celiac" I am not sure if I would notice if I accidently ingested gluten or not.  I am just beginning to see some minor improvements in how I feel and in my pain levels and stamina.  I am not sure how much impact gluten has had on other factors in my past medical history and if continuing to stick to a gluten-free diet will have any  tangible benefits I can directly attribute to it, but I know eating gluten is doing damage even if I can't feel it so I will stick to it!

[ljgs]

Thank you, all who responded. @trents, I certainly will be asking numerous detailed questions of people who have celiac disease and other conditions; I avoided doing so in my introductory post because I first wanted to connect with those who are willing to talk to me. Once we speak by phone or email, I always get much more information. I appreciate your suggestions.