Possible past IBS diagnosis wrong might be Celiac

[Awol cast iron stomach]

Hello everyone I am new here. My cousin suggested I visit your site to help shed light on my symptoms that have occurred over the years. Then after responding to another poster, Jmg saw I was new and suggested I post my own topic to seek support and not get lost. Thanks cuz and Jmg. I do need support 4 decades worth. I hope it's not too long a story and I hope you all can give me support . I have felt that my possibly misdiagnosed Celiac has caused people to  minimize my feelings, call me melodramatic, and crazy for years. Then my husband came along, loved me, in lay terms diagnosed me,  bread is bad, and avoid the negative people who stress you out and literally make you feel bad physiologically . It has made all the difference. It is a long road but he's been with me all the way. 

I have been constipated all my life. As a child I got hives and didn't know why. I had the sensation of urinary urgency but no output and no infection. I begged my mom to take me to the Dr. For it drove me crazy. No infection the explanation it's just her try to keep her calm to relax her muscles to urinate. As I got older those symptoms were UTI diagnosed although there was no infection detected. When I questioned I was told stop taking baths especially bubble baths I was told it irritated my tract. It didn't make sense to me.

 In the traditional world I had GI pain, bloating, and constipation told it was just me .I was told eat more fiber. I had one episode of unexplained gastroenteritis that landed me in the hospital on IV' s presented initially as appendicitis but testing showed it was not. No Gi infection ruled stress. At some point I was diagnosed as IBS and told I had to figure out what I could eat and not eat. I also got shingles as well during this time. In my early 20's I got very bad lower back & sacroiliac pain that again did not stop following a minor fender bender. Physical therapy, muscle relaxant, and pain killers didn't help. I begged my mom to help me she got a name of a chiropractor that put me on probiotics, and calcium/ magnesium . That DC stabilized the pain for years. My DC moved away , as I neared the end of my 20's and newly married I sought help for constant lightheadedness, vertigo, felt like I was walking in a fun house with the right side of my body higher than my left sensation never ending for 3-4 months . I still worked through it all but made the educated decision to stop driving and took public transportation. I was diagnosed with a middle ear infection and was ordered to take an MRI if the symptoms did not resolve at the end of 4 months. It did but, during that time I cried, I told my husband I thought I had an autoimmune disorder and told him I would honor an annulment, for I never would have married him, if I knew I was sick. He stayed and my symptoms resolved right before my MRI. My first pregnancy I miscarried but had looked so bloated many people told me I did not look well so it was for the best, my next pregnancy I delivered a beautiful daughter but I had horrible all day sickness , delivered at 42 weeks by c section, at the end and upon delivery I got an awful Puppp rash ,a uterine inversion and went into shock. I made it. 2 years later with my son's pregnancy it was beyond all day sickness . I felt seasick every day all the time, I had the sensation I was on a rocking boat constantly, I vomited constantly , was put on the Bratt diet. I could barely keep anything down. I had to sit for two hours after I ate otherwise it came up . I was losing weight, and was put on folic acid, i caught fifths disease while pregnant and am thankful my son and I made it through. Then 1year later lightheadedness returned constant and unyielding. I couldn't make it stop. I went to one Dr and begged for him to check my thyroid, it was normal. I was told I ate too many eggs increase fiber ie wheat. It raged on. I went to my OB next for help he said take a good vitamin he thought I had deficiencies. I went to an allergist and dermatologist  as I began to get bizarre hypersensitivities and skin rashes. We bought and  lived in a house with radon and didn't know it for the laws had not yet mandated testing. My body was on overload. I was exhausted.

Two years later when I moved and saw a new primary Dr. her partner dismissed me as crazy but my new Dr I gravitated to immediately discovered I was vitamin d deficient. It was addressed. Then 2 years later I began experiencing edema all over my body . I was bloated everywhere and could not lose weight despite limiting calories and exercise daily. I defied the eat less exercise more motto. I looked pregnant - I wasn't . I got really scared as my fingers swelled to the point of splitting a ring band, I felt so ashamed. Then my toe on my right foot began to get pain and cramping.I had tingling in my upper left arm . My Dr . Had left the practice and they didn't tell me where she went. It terrified me. My husband said bread is bad for you please ignore the IBS  you've been told about your symptoms - just stop bread! I did in 2 weeks I started feeling better, in 2 months it appeared to others I lost 30 lbs. I didn't it was bloating, edema resolving, the rings I resized were now too big, I had normal bowel movements for the first time in my life. I felt better than ever. I read a research study that IBS people often are misdiagnosed celiac' s . I ate a breadstick one day not telling my husband to test the research article. I knew my husband diagnosed me and the research article is right. I announced to everyone I ate guten free meticulously without testing and felt better and looked better. Then after 3 1/2 years of Gluten-Free this March I got glutened twice despite telling hostesses and restaurant/ caterers I was gluten free. I was worse then ever.  I decided I needed to try to obtain diagnosis one more time. I saw a new allergist who referred me to an immunologist who specializes in food intolerance/ sensitivities . She was surprised no one every tested me for celiac. I refuse to eat gluten she understands . I told her if she told me to I would lie. I keep a food diary until I see her again. I believe I am cross reactive to casein and coffee voluntarily self diagnosed  and-stopped  those too.

My husband declared after my recent glutening of 2016  outside my home the whole house is going Gluten-Free. We eradicated all of it from my home . My children are learning to pick new foods/ treats that are allowed in our home.  My Gluten-Free sanctuary. A new acupuncturist/ DC an expert in Celiac , is helping me recover while I continue this journey. I am very inflamed my poor body and immune system.  Not sure where I'm going but gluten will not be with me. I am thankful for my husband and my cousin who is celiac herself and their support.  Many extended family and coworkers during the past 3 1/2 yrs. never believe me and continue to offer me gluten even when I say I can't have it. Self diagnosis is not acknowledged. I don't understand people who do that. why? It is most hurtful after all gluten has done to me. Thanks for listening to my story. I appreciate your support, and verification that I am not crazy just a long overdue misdiagnosed Celiac.

 

 

 

 

 

 

 

 

 

 

[squirmingitch]

{{{{{{{{{{{{{{{{{{{{{{{{{{{{Awol}}}}}}}}}}}}}}}}}}}}}}}}}}}}

You story sounds so familiar here. Countless times I have read the same or similar from people coming here. Years of suffering because no docs took you seriously or didn't test or poo pooed the notion or didn't know to test.

You are so very lucky to have the staunch support of your husband! Your cousin deserves kudos too. 

I think it's wonderful that you guys are taking your household gluten free in support of you! 

Ok, so there are major jerk wads out there who want to play doctor by diagnosing you NOT celiac. They are too stupid to see the irony of that. Ignore them. You have the support of your family and cousin and us. You are not alone. 

[Awol cast iron stomach]

Thank you. I appreciate your support. My cousin said it presents all different ways but that your community would recognize me. 

[cyclinglady]

My hubby went gluten free per the very poor advice of my allergist and his GP.  Does he have celiac disease?  We will never know because it worked!  He refuses to do a three month challenge.  How would he function?  Our business relies on him! 

Thirteen years later, I was diagnosed formally.  He will tell you that I have had more support from family, friends and medical, but that's still not enough to convince him to do a challenge.  

The bottom line is that you need to do what's best for you!  

Ya know I have an Aunt and a cousin who are in the same boat.  Both are/were in the medical field.  They know gluten makes them ill.  Knowing what we all know now, the word is out to the rest of our family.  Get tested first for celiac disease before going gluten free.

We get together on Thanksgiving for a gluten free meal.  It's lovely to visit a home where gluten is banned (besides my own)!  It's my favorite place to visit!  Plus, they have a 100% gluten-free restaurant in their town!  

 

[Awol cast iron stomach]

"We will never know because it worked! "

Thank you cycling lady. Sometimes the most beautiful quotes are short yet impactful. 

[squirmingitch]

Does your cousin know that all her/his first degree relatives should be tested for celiac every 2 years in the absence of symptoms and immediately if symptoms present?

I simply cannot understand extended family members who refuse to acknowledge it's possible for you to be celiac in light of the fact that your cousin is dx'd celiac. Are they stupid? However, in a way I can understand it. It boggles my mind but I do know there are a LOT of people out there who think the idea of never having wheat, barley or rye again is unacceptable and it scares the very pants off of them. I think they also project their fear onto people like you. if they admit you have a problem with it, then they will have to consider that they may have a problem with it, if not now but one day in the future. They simply can NOT handle the thought. They don't EVER want to be told they can't have bread or pasta again so they stick their heads in the sand. 

[Awol cast iron stomach]

Hi squirmingitch yes my cousin does know to have 1st  degree relatives tested. She shared that information too. As of now just her and likely me. I am her first cousin i.e. 3rd degree relative. 

Well it's tough to say but one of my most challenging relatives who is the most dismissive or "forgetful" of my gluten-free lifestyle is a  nurse not in the area of GI or immunology but a nurse none the less. Most of my negative events are in her presence. Example in restaurant I am telling waiter I am Gluten-Free and stating no bun please give me extra lettuce to make a sandwich etc. He responds lady that's called a steak . You want a steak not a hamburger. Nurse laughs the longest and loudest at the table, others at table fall quiet, then she grabs a roll and offers me the bread basket immediately when it comes.  Who needs enemies when you got a sister like that. My opinion her controlling sister side usurps any sense of nurse knowledge and bedside manner around me. I really hate family events not only from the stress of potential glutening but negative interactions as such. Now you know why I am seeking support from total strangers. Sad isn't it? It takes great discipline and grace not to up the ante at the scene and punch her out  but at least my parents raised one of us right.

[squirmingitch]

I am a bit blunt when it comes to things like your sister the nurse doing what she's doing. Next time she did that I would flat out look her straight in the eye & tell her to back the eff off! That's just me. Seems like ever since menopause I don't have the slightest trouble telling people just where to step off. I don't get violent & certainly not physical but they don't have any doubt that I'm dead serious.

[Jmg]

Awol there's so much in your story that I identify with. The early shingles, back pain and more.

I think your husband sounds like a great guy. Good on him for being so supportive and understanding.  Your sister, er less so! If she does it again break her broomstick, or throw a bucket of water over her, worked for Dorothy.

I hope writing this down helps, it did for me. Maybe your first post here could be somewhere you may direct someone if you want them to get a better idea of exactly how much this has affected you without having to go through it.  

As for self diagnosis, you know yourself better than anyone. If you've worked out gluten is a problem and you can't face the challenge then that should be sufficient for those closest to you. After my negative endoscopy the GE told me to avoid gluten for life anyway, so there's not much practical difference between a diagnosis of coeliac or ncgi. It's not as if you're dipping in and out of the diet as a fad, you're simply asserting your right not to make yourself sick. Be proud of that. 

[Awol cast iron stomach]

."If you've worked out gluten is a problem and you can't face the challenge then that should be sufficient for those closest to you. After my negative endoscopy the GE told me to avoid gluten for life anyway, so there's not much practical difference between a diagnosis of coeliac or ncgi."

Thank again much wisdom from you and the others. I find you very helpful. You always know the right thing to say. At this stage of my life I literally blow up everywhere especially at the chin/neck and upper area of small intestine /abdomen. The irony is you don't have to be a Dr or a scientist to know gluten is bad for me. You need gluten, the gift of sight , and 35 minutes.

I tell my husband I'm my own human quality control monitor for the food industry. If you say it files not contain gluten and its does_-I'll know. I don't enjoy being a lab rat .  All joking aside, gosh your endoscopy was negative! All that for something you knew. Oh goodness no, knowing what you shared and literally seeing my body change from looking normal to 5 months pregnant 35 minutes after consuming it. I think any lay person could see I am some form of intolerant to the evil gluten.

Wouldn't most people have to take a leave of absence from work ? I can't imagine actively really eating gluten and being able to work . My glutenings happened in March and I only started feeling almost normal 2 weeks ago the end of May . I got invited to a bbq and didn't go, I was so glad to be feeling better , I didn't want to risk another incident. My bowels are still not back to my gluten-free state.

People (not you ) can call me a wimp  honest -no I'm not up for the challenge . I like to think I am sane and stubborn. If people who knew me in the past knew I no longer eat deep dish chicago pizza, and bagels they would say it really must make her feel bad if she won't eat it because she waitresses in a pizza place.

No not a diet fad for me . I'll tell someone whatever their judgemental mind wants to hear about my gluten-free reasons as long as it gets that poison away from me.

Thanks for the support Jmg.

 

[Jmg]

On 6/6/2016 at 10:56 PM, Awol cast iron stomach said:

 

Wouldn't most people have to take a leave of absence from work ? I can't imagine actively really eating gluten and being able to work . My glutenings happened in March and I only started feeling almost normal 2 weeks ago the end of May . I got invited to a bbq and didn't go, I was so glad to be feeling better , I didn't want to risk another incident. My bowels are still not back to my gluten-free state.

People (not you ) can call me a wimp  honest -no I'm not up for the challenge .  

 

I wouldn't dream of it  - one thing this site and this condition has taught me is that each of us have to be our own advocate and ultimately take responsibility for how we approach this. The question of whether to pursue a diagnosis or not is not always clear-cut, in part because there's no treatment available at the end of the process, so it really depends on the individual. 

If you did decide to do a challenge there's lots of good advice available here and elsewhere. From tapering up the quantity of gluten ingested to timing it so the worst of the symptoms occur at night. I will say that keeping a diary during the challenge was useful to me as was posting here and both helped me deal with the depression and brain fog side in particular. It was unpleasant of course, but easier once I knew the cause and that it was only temporary. So if you did decide to do it there would be support you could access and it may not be as bad as you fear.

That said, it's perhaps worth pursuing the diagnosis to get family screened, to ensure your given a gluten-free diet in the event of a hospital visit or to help you maintain the discipline of the diet, but you're already there with the latter, so get as much good info as you can and then trust your inner voice. Just make sure you tell your doctor in case they want to exclude any other possible cause and then get on with life. 

All the best