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Newbie Here, 11 Months Since Going Gluten Free And Still Bitter?

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Posted 08 November 2012 - 09:59 AM

My name is Amanda. I am married and have 5 beautiful children. I first want to tell you all that it is SO wonderful to feel like I fit in somewhere. I just read the newbie 101 post and was like, "oh really?" ," that makes so much sense" I am going to print it out and read it so I have the words to use when I see my Dr next and she tries to tell me I have IBS along with Celiac because I can't tolerate dairy. Call it what you want, just don't try to medicate me for it!:) Anywhoo, a little about me, I have been sick for the last 5 years. Lots of appointments, and I believe I nearly lost my mind. Okay who am I kidding, I have lost my mind a few times. However, what I am proudest to announce is that when I quit eating gluten and the brain fog lifted, I had a clarity I have never had before. But, the big BUT here is that the road was horrible to get here, I don't present like the most common celiac patients do so, no one ever thought to go down that road. I have seen every specialist that there is and suffered such chronic pain that I had been labeled a drug seeker in the E.R.'s. I could never explain exactly what hurt just that something was very wrong and I felt HORRIBLE! I have suffered horrible constipation since I was a child. Most doctors associate Diarrhea with Celiac not constipation. So long story, long.....I laid in the hospital 1 year ago today for 16 days. My body was done......I had become Adrenal Insufficient, they assume from the steroid injections they gave me for my belly pain. I had battled the AI for months. I was taking steroids, injectable and po. I was dumping my nutrients into my urine but they couldn't tell me why. I couldn't get rid of the i.v. delivering fluids, and potassium replacements. My heart rate had become horribly tacychacardic.... again they couldn't explain it but I couldn't walk up the stairs without being completely out of breath. My heart rate was always over 100. They put me on a beta blocker to lower my heart rate. I was in the hospital because I couldn't' function without the I.V. every time they would turn it off I would pee out 2 times what I had taken in and always ended up sick and vomiting within a matter of hours. I had been admitted multiple times for I.V. fluids because I just couldn't stay hydrated. I had doctor after doctor tell me they didn't know what was wrong or how to fix it . I was treated with medications as a band aid for the physical symptoms I was having and various sedatives for the my emotional symptoms. I once read in my chart that a nurse felt it was my anxiety that was causing a lot of my symptoms and I should take more lorazepam. After being in one hospital for 12 days, I asked them if they had any plan on getting me home to be with my family and they said the only thing they could think to do was put in a port so I could have I.V. fluids at home. I requested a transfer to the U.W Hospital here in Madison. After getting to the U.W. they helped to brainstorm ways to get me home....as it was quite apparent to me I wasn't going to get a diagnosis but if I didn't get out of the hospital they were going to kill me. The beta blocker had jacked my blood pressure and I still felt like CRAP! They adjusted my meds and told me to drink gallons of fluids a day to keep up with hydration and sent me home, I was to follow up with Endocrinology and Nephrology. It became my mission to fix me. I reviewed every doctors note I could and every lab post I could. I stumbled over some IGG and IGA test results that made me scratch my head. They weren't horribly off but I had also really reduced the amount of gluten I was eating and it just didn't make sense to me that they were bordering ab-normal. It was a Friday, I called my FP doc and said I suspected celiac and it being Friday she said I had two choices, 1 come in for blood testing, and wait to be referred back to G.I. or 2.stop eating gluten. I stopped eating Gluten that Friday and by Monday I felt like I was a new person. I started to have a clarity like I had never known. My heart rate and feeling of pounding had started to subside, and I started to pee yellow again, not gallons of non concentrated urine. I actually was feeling hydrated for the first time in a long time. It was clear to me I would never look back, I had missed so much of my children's lives and normal life I wanted the doctors office to stay FAR away from me. My PCP said she respected this. When I explained my thoughts she said I was saying the same things her other Celiac patients said. I felt like I had been given a second chance. However, I was badly scarred......I had been told time and time again, it was in my head but twice had been admitted to a psychiatric unit and no medicine they could give me would take away this FOG and anxiety and depression. So fast forward to today.....1 year after that final hospitalization, I am BITTER. I should be thankful that I have the answer. I should be thankful that if I eat no grains, or dairy, I feel better than I ever have. However, I have lost a lot of confidence in my self, in my ability to know my own body. I question myself continually and dread having to go to the doctor or even having to call the doctors office for ANYTHING. I have a really hard time with vitamin absorption, I take A LOT of B and D and after months of supplementation I finally got back to the low end of normal limits. I am bitter that I feel alone. My husband is not a big supporter of me needing to have gluten free. Well he says he is and makes me awesome gluten free fried pickles, but than I turn around and between him and the kids I have mountains of gluten crumbs on my counter, in my sink,, etc. I keep my head up and do so well but then fall off the wagon so to speak and eat fast food that is CC or take just a bite of something I know has gluten in it. I should know better, I should respect myself more than that.....but again, I question myself. After being questioned by everyone for so many years of illness, I revert back to that mind set. Don't worry, I am in therapy....:) We are working through this trauma. So yesterday when I stumbled upon this forum, I had a peace of mind, a familiar connection and everything made sense. It felt so good. I vow I am going to try harder to be my own advocate from here out. I am coming off a couple weeks of bad glutening of being careless. I actually had an allergic reaction after eating in a restaurant Monday morning and my throat started to get tight and I had to take Benadryl . I fear I pushed my body too far. I had been crying for 3 days, extreme fatigue, and started with severe joint pain last night and it dawned on me, this is how I feel when my vitamin B levels drop. I put a call into my PCP this morning and the anxiety started again when the nurse called me back....why do I care what they think? I asked her if I would be able to have a vitamin B injection versus upping my sublingual because of how bad the pain is. I guess we will see what the day brings. If you made it through this entire post, bless you!! Is anyone out there still bitter?
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Posted 08 November 2012 - 10:56 AM

Hi Amanda
I can't even imagine the long, slow, painful road you've travelled to get this far, and after all those years of misdiagnosis, I don't blame you for being bitter.
Welcome to the forum. This is definitely the best place on the web for information and support, and hopefully we can all help. Sometimes just having someone to rant at and tell you you're doing the right thing is helpful.

You ARE doing the right thing. and keep doing more of it.
After that many years of doubt and uncertainty from doctors, family, and yourself, it can indeed be hard to trust what you know has to be done. The gluten free diet (and free of anything else you can't tolerate) is a life-long committment and must be as strict as possible. You have to drill it into your own head, and your family's head, that the smallest amount of gluten can harm you. You know you're getting better, and you're taking things seriously, but everyone else around you needs to do so as well. The more supportive they are, the more helpful in minimizing the amount of gluten you could come in contact with (all those crumbs on the counter, etc), the healthier and happier you'll be.

It's going to take a while longer before you will heal completely (and some of us are never 100% again, but compared to how things were before, 90% is great!), and that will take hard work, but it will get better! You'll get used to your diet, get your family trained to clean that counter, and begin to trust your own judgement (and probably teach your doctors a thing or two in the process).

So, say strong, stay away from the evil gluten, and we're here for you.

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~ Be a light unto yourself. ~ - The Buddha

- Gluten-free since March 2009 (not officially diagnosed, but most likely Celiac). Symptoms have greatly improved or disappeared since.
- Soy intolerant. Dairy free (likely casein intolerant). Problems with eggs, quinoa, brown rice

- mild gastritis seen on endoscopy Oct 2012. Not sure if healed or not.
- Family members with Celiac: Mother, sister, aunt on mother's side, aunt and uncle on father's side, more being diagnosed every year.



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Posted 08 November 2012 - 12:15 PM

Wow....just wow. I read through that entire post, word for word, and all I can feel is sympathy. To have gone through the agony that you did only to be in the boat you are in...yes, I would be bitter. Not bitter because YOU know, but bitter because THEY did not. And bitter because you had to soul search, research and plead with everyone to find what some doctors may have been able to identify early on if you had encountered that one right person. It's terrible that you suffered, and still suffer, both the mental and physical problems.

I'm not sure what to say other than your pain comes through loud and clear. It's heartbreaking when anyone suffers from an illness, but your level of suffering extends far beyond what most people endure before a diagnosis. Many have walked in your shoes, but I have not so all I can do is wish you well, with clarity of mind and peace within your body.

Please visit often. I'm new here as well and it's just so easy to find friendship and kinship among those who know and understand what you go through. You know what's wrong with you, you know the fix for it....just stay strong and avoid it at all costs. Never is that single bite ever worth it, especially after all you've endured to finally find your answer. Fight for support, very strong support, within your family and encourage them be part of your front line of defense against the harm from gluten. You can't lose with great support!
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Posted 08 November 2012 - 01:03 PM

Pegleg84 and SMDBill, Thank You SO much for your kind words. They truly touched me and have given me the confidence I need today. I am going in to the doctor at 4:15 to have my vitamin levels drawn. I am not sure whether it is the vitamin B or D level that is low as last time I felt this crappy they were both low. I am having so much muscle pain I asked them if they could give me an injection of catorelack (sp?) as they suggested ibuprofen every 6 hours and I was like, I'm not even tolerating my soup broth well right now, don't think my stomach can handle that. Again, thanks......your kindness is SO much appreciated!!
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Posted 08 November 2012 - 02:59 PM

No, I'm not bitter, I try to avoid glutening myself as best I can because I don't like the side effects, and I am grateful to the other bloggers many years ago who were blogging against conventional medical wisdom and writing about diet, starch, gluten, and inflammation. Of course, I have pretty good support at home, because my spouse decided spontaneously to go gluten free at home after seeing me laid out from an accidental cross contamination. This is the only auto immune disease that can have most symptoms being controlled by a diet change, it beats the alternatives of being doused with large amounts of chemicals with horrible side effects.

I am only ornery to the memory of several docs that should have picked this condition up from medical tests, having had one lie to my face and insist I was making up my ataxia/neuro symptoms, when she didn't realize I had gotten the test results otherwise showing brain and spine damage, it was pretty near a mind blowing experience, I repeat the story often as a warning to make sure if they run tests, you do get the results. She kept looking at the file when she was doing this, too, so it wasn't one of those errors of omission. This is the state of the medical system in our country. Change is incremental, but it is creeping along. My spouse said the other day he is constantly surprised that when he meets new people, chances are they know of, or have a family member, that is gluten intolerant. I also helped successfully talk someone I know into going gluten free, and they really needed to be that way, and they look a LOT better. So there is that.

If you're craving vinegar (classic mineral craving) be aware that there are other ways to get it, besides pickles. Some of us are very sensitive, even to grain distilled vinegars, and do better with fruit sourced vinegars such as pure apple cider vinegar. You can always take cukes and make your own refrigerator pickles or salads.

You may be able to get the dairy back eventually, in the form of aged cheeses and safe yogurt, IF, you go really strictly gluten free and don't keep re setting off the reaction again and again with eating gluten. But you will have to commit to wanting to feel better, not wanting to be like a so-called normal person who can eat anything. Well, guess what ? There are millions of "normal" people who are really messed up anyway, eating "anything" in social situations, and insisting that THEY are the normal ones, as they live on acid reflux meds, mood enhancers, stimulants, Ambien, and can't get thru any evening without half a bottle of wine or a six pack. Really, they have no problems, according to themselves. You likely get an obnoxious Holiday Newsletter from them every December, describing their year's activities. Docs love these people, especially when they try to quit smoking or go on weight loss diets, or have high blood cholesterol, then they can provide them with even more prescriptions $$$ to deal with the habits they picked up from stressing out !
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Posted 08 November 2012 - 04:08 PM

Hi TripleF,

That's a pretty horrific story. It's unfotunate that so many people with celiac have this kind of story. But many do. The doctors should test for celiac but often don't think of it or even refuse direct requests to test people. I am not bitter though. I have found a way to feel good most of the time and that is great. My sister figured out I had celiac, not my doctor.

Can you take your whole house gluten-free? That might be touchy but it would reduce the gluten cc possibility. Have you found Tinkyada pata yet? It is gluten-free and most people like it. Mission corn tortillas make a good sub for bread. Wet them down and warm them up so they don't crack when folded.

The autoimmune reaction can last for a couple weeks. So if you are eating gluten one day the results and damage can continue for a couple weeks or more. Getting glutened a couple times a month is enough to really slow down your healing proess or even stop it. You have to reallly stay away for gluten if you want to get better. There are a whole lot of gluten-free foods you can eat. Check the meal threads below for ideas.

Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.
Get your vitamin/mineral levels tested also.
Don't eat in restaurants
Eat only whole foods not processed foods.
Eat only food you cook yourself, think simple foods, not gourmet meals.
Take probiotics.
Take gluten-free vitamins.
Take digestive enzymes.
Avoid dairy.
Avoid sugars and starchy foods.
Avoid alcohol.

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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul



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Posted 09 November 2012 - 11:14 AM

Pegleg84 and SMDBill, Thank You SO much for your kind words. They truly touched me and have given me the confidence I need today. I am going in to the doctor at 4:15 to have my vitamin levels drawn. I am not sure whether it is the vitamin B or D level that is low as last time I felt this crappy they were both low. I am having so much muscle pain I asked them if they could give me an injection of catorelack (sp?) as they suggested ibuprofen every 6 hours and I was like, I'm not even tolerating my soup broth well right now, don't think my stomach can handle that. Again, thanks......your kindness is SO much appreciated!!

keterolac is no kinder to the gut, even though it is injected. I would suggest finding a good therapist, not because I think you are "crazy", but you need to learn that YOU are worth protecting and the he.. with the rest of the world. sort of.
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Posted 09 November 2012 - 11:50 AM

keterolac is no kinder to the gut, even though it is injected. I would suggest finding a good therapist, not because I think you are "crazy", but you need to learn that YOU are worth protecting and the he.. with the rest of the world. sort of.

Thank You Frieze, I do see a really good therapist, sometimes once a week. I am learning how to be stronger and stick up for myself. Sometimes shit happens, I get that.....I am working through the amount of trauma that I endured and am also learning how to stand up to those around me, including my own family, to protect myself. This support group is a great step. Knowledge is power! I didn't know that about Keterolac, unfortunately I call the shots usually at my clinic, which can be a good thing and a bad thing. I just knew I couldn't stomach anything with the current condition of my stomach. I have a great doctor who is very good and I have already established a good relationship with. While she is not a celiac specialist or a G.I. doctor, she listens. I found when seeing a G.I. doctor, it just frustrated me more to see a G.I. with no celiac knowledge. Luckily, there is nothing medically I need other than to balance my vitamins. The rest I can do on my own. :)
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Posted 09 November 2012 - 04:45 PM

Get your kids tested. Undiagnosed celiac is torture . I lived it 40+ yrs. I also had episode of tachicardia with anxiety , insomnia, etc. Took magnesium and it helped. I have no help from doctors. Be good to yourself , take very good care of yourself . You are going to need your health and healing . Life is shorter for us.
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