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Devastated, Angry, Frustrated...


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#1 Momma Bear

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Posted 30 August 2012 - 06:51 PM

Two weeks ago my life was turned upside down with a follow up doctor's appointment. I initially went to my doctor for a long overdue check up (I have Behcets disease and while I normally just deal with the symptoms, I thought I should get evaluated for some shortness of breath). I happened to mention that I eat gluten free (for about the last four months) because it significantly reduced my IBS. He decided to run a celiac panel, though he wasn't so sure it would show anything. Fast foward a few days and I received a call saying I needed to come in to go over my lab results. I was told that my bloodwork said I not only had celiac but I was one of the worst cases he has ever seen and he suspects significant intestinal damage (said my anti gliadin, anti endomysiol levels were really high, though I didn't see the results). I was informed that my vitamin B12 was very low as well as my vitamin D. I am having a biopsy in a few weeks. To compound all this, my doctor also suspects I may have Ankylosing Spondylitis (I have arthritis in my spine that is steadily getting worse as well as testing positive for the HLA-B27 gene). He also threw out the scary lymphoma word...why??

I am struggling with this because in looking back (I am 32), I can see how painfully obvious this diagnosis is and that it is very likely I have had this since I was a young child. Let me just say, my childhood was miserable and I spent a good chunk of it being poked and prodded trying to find out what was wrong with me (they initially thought Crohns or inflammatory bowel - both ruled out). I should also mention that I suspect I have DH as well since I have a scaly nasty rash on my scalp. The itch is so intense and the sores weep so that my hair looks greasy when it's flaring up. It has slowly taken over the entire back of my head. Again, I am angry because it's something I've dealt with since childhood and no doctor has ever given it a second thought. I have also had this dull ache next to my belly button for over a year - assuming it was maybe a hernia...now, who knows! I have never felt good a day in my life and i have gotten so used to being sick that it became my normal.

How do you deal with all of this? I am a mom of young children and I feel like I am falling apart at the seams right now. I have a strong faith in God and I trust that He has a plan for me....it's just not the plan I was hoping for. Do you ever get over the devastation and settle into a new normal? I just don't know what to expect.

If you made it all the way through this rant, thank you.
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#2 Marilyn R

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Posted 30 August 2012 - 09:20 PM

From everything I've read (and experienced), the anger is normal. What you've been through isn't fair! You did everything right.

You're also doing the right thing by writing about it and using the forum to learn about proceeding with a gluten-free lifestyle in order to improve your health and wellbeing.

Allow yourself to go through the anger phase. It took me about a year to get over being angry, but I'm older than you and perhaps more set in my ways.

Because you have multiple autoimmune diseases, try to focus on stress reduction. I read that Yoko Ono gave John Lennon a card that simply said "Breathe" when they met. Try to make time for yourself to relax (nothing makes me relax more than a nice hot bath with salts and a nice scent like peppermint oil).

I know someone who had so many tumors in her stomach that her oncologist told her she couldn't treat her anymore. The cancer completely resolved without treatment. Her primary care physician, someone I respect and have known for over 10 years, attributes this woman's recovery 100 percent to stress reduction. The oncologist told this doctor that the cancer was auto-immune based and resolved itself.

You're on the right path. It isn't an easy one, but it will be a better one than you've already been done. Hang in there! You have a lot of people rooting for you...
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Positive improvement from elimination diet. Mother dx'd by Mayo Clinic in late 1980s. Negative blood tests and Upper & Lower GI biopsy. Parathyroidectomy 12/09. Recurring high calcium level 4/10. Gluten-free 4/10. Soy & Dairy Free 6/10. Corn free 7/10. Grain free except rice 8/10. Legume free 6/11. Fighting the battle of the battle within myself, and I'm going to win!

As of 2/12, tolerating dairy, corn, legumes and some soy, but I limit soy to tamari sauce or modest soy additives. Won't ever try quinoa again!

Discoid Lupus from skin biopsy 2011, discovered 2/12 when picking up medical records. Systemic Lupus Dx 6/12. Shingles 10/12.

#3 ravenwoodglass

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Posted 31 August 2012 - 02:10 AM

Welcome to the board. It is normal to feel as you do. It will take some time to heal but you will heal. You may find a lot more resolves than you can imagine and in a few months you will likely feel better than you have for a very long time. While the gluten free lifestyle does have a bit of learning and takes some getting used to after you have healed it will be so worth all the trouble.
If your doctor is not giving you B12 shots get some good gluten-free sublingual tablets to bring those levels up. Some of us went a long time suffering before we got diagnosed, it was 45 years for me, and it does make someone angry that the diagnosis was overlooked for so long. Try to concentrate on learning what you need to learn to keep yourself safe, ask any questions you need to and read as much as you can here. Since you have scalp lesions do make sure to check your shampoos and conditioners etc for gluten ingredients. If you have questions about what you can use check out the products section to find safe options or ask if your favorites are safe. Hopefully your doctor told you that all your first degree family members need to be tested now. That includes parents, your children and siblings. I hope you recover quickly but we do often have some ups and downs at first.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#4 mommyof4

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Posted 31 August 2012 - 04:31 AM

I just want to encourage you to "hang in there". Without trying to over simplify, really try to walk through one day at a time...tackle each new problem as it arises. It's only natural to feel frustrated & discouraged. Believe me, I get that!

I was diagnosed last Fall & I also am a mom (of 4). I was in & out of the hospital, lost 22 lbs in a few weeks, & was in pain. I couldn't even grocery shop for a couple months because I was so weak from lack of absorbing nutrients & dehydration. I was frustrated & discouraged...all I wanted to do was keep living! I had to have my mom & mother-in-law help me with the kids for a while. My sister-in-law kept telling me "this is a season you are walking through, NOT staying in!" I still try to remind myself of that when I have a rougher day. I have had other health issues arise because of the damage, BUT the rough days are fewer.

I agree with the previous post about stress reduction activities...that can really help. A massage or relaxing with a cup of tea. You mentioned that you are a religious person...I also am, and I have little notecards all over my house with Bible verses to encourage my mind & heart.

One other little thought, if you can have someone go with you to your dr appointments, that can be helpful. Often so much information is given that it can be difficult to remember everything.

This is a great site to post on...people are supportive, encouraging & experienced. Keep us posted on how you are doing & what you find out!
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#5 1desperateladysaved

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Posted 31 August 2012 - 06:08 AM

This verse has carried my through some of the last few months since I found out I have celiac. I hope that it will help you.

"And even to your old age I am He, and even to gray hairs will I carry you. I have made, and I will bear; even I will carry, and will deliver you." Is. 46:4

You have been sick a couple of years longer than I, however, I was 19 when I fell ill. We are not too heavy for the Lord. Hang in there, or just be carried.

Diana
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#6 GFinDC

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Posted 31 August 2012 - 11:20 AM

Welcome to the forum Mommabear,

It sounds like you may have found the answer to your prayers with celiac disease. Celiac is autoimmune also and can affect any part of the body. There are 300 possible symptoms of celiac disease. The good news is that if it is celiac disease (and I don't doubt it at all) that you can improve your health greatly by simply changing your diet. There aren't many diseases where that is true. It's kind of like being given a get out jail free card.

It's possible you have been mis-diagnosed for years, that happens with celiac. All those 300 various symptoms often seem to indicate something else and the celiac test could clear it up but doctors don't run them often enough.

I like this verse, it is about Paul's request for release from the thorn in his side:

2 Corinthians 12:9 (King James Version)


2 Corinthians 12:9
King James Version (KJV)

9 And he said unto me, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me.


Anyway, It i can be a rough road for the first 3 to 6 months of the gluten-free diet. Sometimes longer. It takes a while to heal our intestine and for the body to absorb enough vitamins etc to heal. Also the gut bacteria balance needs to change to accomodate the new foods being eaten. Instead of spending hours in the grocery store reading food labels on processed foods, it is better to eat whole foods instead. They are better for you too. I feel better now than I did 10 years ago. I had pain in my abdomen also and it went away after5 9 months or so on the gluten-free diet. Being angry or emotional is normal IMHO, it is a big piece of news to hear you have an autoimmune disease that requires a lifetime diet change. But it is something that gets easier after you have done it a while. And it's very worthwhile once you start feeling better.

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

Get tested before starting the gluten-free diet.
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 digestive enzymes.
Avoid dairy.
Avoid sugars and starchy foods.
Avoid alcohol.


FAQ Celiac com
http://www.celiac.co...celiac-disease/

Newbie Info 101
http://www.celiac.co...ewbie-info-101/

What's For Breakfast Today?
http://www.celiac.co...reakfast-today/

What Did You Have For Lunch Today?
http://www.celiac.co...or-lunch-today/

What Are You Cooking Tonight?
http://www.celiac.co...ooking-tonight/

Dessert thread
http://www.celiac.co...399#entry802399

Easy yummy bread in minutes
http://www.celiac.co...ead-in-minutes/

How bad is cheating?
http://www.celiac.co...t-periodically/

Short temper thread
http://www.celiac.co...per-depression/

Non celiac wheat sensitivity article
http://www.nature.co...jg2012236a.html
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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

#7 nvsmom

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Posted 31 August 2012 - 02:32 PM

I too was recently diagnosed with celiac after a lifetime of discomfort, and I felt that bitterness that so much time was wasted. Knowing that I could have been healthier for decades, and that my other autoimmune diseases are linked or caused by this, was a hard pill to swallow. It's unfair, and I feel for you.

I'm not a religous person, but I like to quote my favourite fortune cookie: Acceptance is the key to happiness. ...Eventually acceptance will come and you'll be able to move forward.

I wish you the best and a quick adjustment to this new way of regarding food. (hugs)
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Celiac - June, 2012
Hypothyroid - August, 2012

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#8 Takala

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Posted 31 August 2012 - 03:17 PM

I try to stick to the gluten free diet, that was originally proposed as a "starch free" SCD by the eating pioneers in the field.

Today, maybe 30+ years since I was told I was arthritic, and nine years into this gluten free thing, I'm more flexible and functional as an older adult approaching early retirement age, than I was as a young adult.

I have found conventional rheumatologists to just be rather useless with this concept of certain food causes massive inflammation for some of us. Oh, well. Beware that they do not try to drug you into a permanent state of disability, because that is all they have.

For the scalp problems, you MUST get rid of any shampoos and conditioners that have wheat and oats in them. Clean your hairbrushes and combs.

Suggest you just start rinsing your hair daily with water and maybe a bit of baking soda, then rinsing again, then putting a bit of pure apple cider vinegar in water, 1 part vinegar to eight parts water, and using that as the "conditioner," until you get a shampoo you don't react to. You can also put diluted vinegar and water in a spray bottle for spritzing on your wet or dry hair. If you have fuzzy hair, try a tiny dab of pure coconut oil or shea butter rubbed into it after your rinsings.

I am guessing you do not color your hair, but, in the future, if you do, try to use brands without gluten. Also, check your makeup, if you use any, the big concern is lipstick. I have extremely sensitive skin and use mineral cosmetics. I have also had many complements on how much better my skin looks since going gluten free. My hair also grew back in thicker. You will like this part. :)

Your spouse and children: ditch their personal care products also, if you react to them, and replace them with safe ones.

Get children tested.

You may contemplate taking your house gluten free, so as to simplify cooking meals and reduce chance of cross contamination. My husband volunteered to do this after seeing me get sick one two many times accidentally. He still eats whatever he wants when he goes out for work. Get a crockpot, if you don't have one already.

Testing recipes: you can bake in the microwave in small cups, before blowing a lot of dough on a 2lb loaf of something you end up not liking. ;)

Wash your bedsheets and towels and pillowcases to get rid of any old residues. If you have a cat which sleeps on the bed, change the cat food to gluten free, oat free, barley free. Check and go to unscented cat litter (some litters are made of wheat!) Ditto if you have any other inside pets, get rid of the gluten in their food. Pets lick themselves, and spread that stuff all over the place, especially if they sneak in and jump up on the bed when they think you aren't looking or you aren't home.

Pet treats. Use rice cakes. Pet chews- use plain ones, and not those from China. Last thing I want to find stashed by a retriever, in my laundry or in the bedspread is a half chewed glutenous toy.

Lay off the iodized salt for now, that also aggravates it. WATCH OUT for some salt mixtures which have dextrose, especially unsourced dextrose, which is a grain byproduct.

You will have to work a bit harder to get this under control than some people, but once you do, you may be shocked at how differently you feel, especially if you stop being malnourished. The new normal means that I just read labels when shopping, with attention to detail much more fanatically than the average person, and I eat "healthier," and I try to encourage people who are starting out that the results are worth it. When I'm not getting after manufacturers who are using hidden gluten.... <_< or the media which keeps trying to portray this as "fad" dieting. :ph34r:

This is the one auto immune disease which can be controlled by diet. :)
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#9 Momma Bear

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Posted 02 September 2012 - 06:57 AM

Wow! Thank you so much for all of the thoughtful and very helpful replies - I started bawling when I was reading all of the responses. I know I am just starting out on this journey towards better health but I already feel so much better emotionally, just knowing that I'm not alone in this struggle. For my fellow believers in Christ, thank you for the Scriptures and prayers -what a blessing! I have learned so much in this past week and I am hopeful that I will eventually settle into this new way of living. There are times where I am just overwhelmed with anger and emotion but I know that this will pass. Again, thank you for each of you that took the time for me to respond to my desperate cry for help. I am just floored, really. I hope that someday I will be able to encourage someone who has to walk this journey the way I've been encouraged here.
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#10 Judyin Philly

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Posted 02 September 2012 - 11:57 AM

Good luck on your journey I'm so glad you're getting support on the forum
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Judy in Southern CA

#11 T.H.

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Posted 02 September 2012 - 11:39 PM

*hugs*

I'd second Takala in getting the children tested. If they are negative, some experts recommend testing them every 2-5 years, for the rest of their lives, or if they start developing symptoms. This disease can trigger at any time, and symptoms may show up only after damage it being done.

You also may want to see how many of your family members you can get tested, too. Siblings, parents, and children are now 10 times more likely to have this disease, now that the diagnosis is in the family. Cousins, aunts, and uncles are about 4-5 times more likely to have this disease.

Re: the anger - I personally have been using to try and help other people. I sent letters to all the doctors that missed this. Told them what my symptoms were that they saw me for, and told them what it actually was. It might not make a difference, but just maybe they'll see someone in the future with those same symptoms and they'll remember and test them. And it certainly won't hurt.

I also share this with others if they mention having similar symptoms, sometimes even if they don't, and there have been folks it has definitely helped who now have a chance at getting healthy, just like me. One of these was a mother whose infant was reacting, and gluten turned out to be the reason. Docs totally missed it.

We can't get back those years, but I like to think that our outrage and passion over this issue may be able to get those years for others, and make something good come out of this.
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T.H.

Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease

23 years with undiagnosed sulfite sensitivity

25 years with undiagnosed mast cell activation disorder (MCAD) 

 

Daughter: celiac and MCAD positive

Son: gluten intolerant
Father, brother: celiac positive


#12 GFinDC

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Posted 03 September 2012 - 09:45 AM

Hey Mommabear,

It may take awhile but your body as it heals will be able to absorb more vitamins and stuff that it needs from your food. Sometimes people take sublingual B-12 to help with absorption. Be sure to look for vitamin pills with no gluten, and hopefully no dairy or soy also. Nature Made and Solgar are pretty good brands. You may find you have more energy after you have been on the gluten-free diet a while. Our bodies spend a lot of energy trying to destroy and then repair the gut and when they don't need to do that it can be used for other things.

Gluten can also affect the brain (gluten ataxia) and can cause depression and anxiety. Some people even have gluten withdrawal effects due to e opiate like molecule structure of gliaden. It really can affect any part of the body. But our bodies are amazing things and can recover also. Simple whole foods are the way to go when healing. Processed foods are risky and time consuming to figure out if they are safe.

Plain meats, nuts, fruits, veggies are good for us. After a while on the gluten-free diet you will know your reactions to CC (cross contamination) better and can try processed foods. Shared toasters and condiments like peanut butter and mayo in jars are bad. You should get your own and mark them with a marker. May6be put all the gluten-free food on one shelf or area and keep it separate from the gluten stuff. It's a learning process but well worth doing. I hope you feel better soon! :)
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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

#13 Momma Bear

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Posted 03 September 2012 - 02:33 PM

Again, thanks for all of the guidance! I already took my children for bloodwork and got a call Friday saying that the results were negative (antibody levels at 2 for one of them). We completely removed all forms of gluten from the house, including all personal hygiene products, laundry soaps, etc. I am also eating a whole foods diet, as my doctor instructed, and I was also told no eating out for now (though the irony is that I never did like eating out because it always made me sick, now I know why!). I was given a vitamin B12 injection at the doctor's, as well as a prescription for a B12 nasal spray. In addition, my doctor has me taking D supplements. I'm going for another blood draw mid October to see where I'm at with my antibody levels (hopefully non-existent!!), and my vitamin levels and then from there he's going to make decisions as to what the next step is if there's not enough improvement in the vitamins. I dont feel any different yet and one thing that is really bugging me is that I am still struggling to breath at times (this was new as of a month and a half ago, prompting my initial visit to this new doctor). I had lung function test as well as an x-ray and everything was okay. He did say he could hear crackling in my lungs, not sure what that's from but I have to assume its the acid reflux. Anyway, I am doing what needs to be done and I hope I am on the right track to getting healthy, finally! Thank you, thank you, thank you again for all of the help!!
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#14 frieze

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Posted 03 September 2012 - 05:45 PM

Again, thanks for all of the guidance! I already took my children for bloodwork and got a call Friday saying that the results were negative (antibody levels at 2 for one of them). We completely removed all forms of gluten from the house, including all personal hygiene products, laundry soaps, etc. I am also eating a whole foods diet, as my doctor instructed, and I was also told no eating out for now (though the irony is that I never did like eating out because it always made me sick, now I know why!). I was given a vitamin B12 injection at the doctor's, as well as a prescription for a B12 nasal spray. In addition, my doctor has me taking D supplements. I'm going for another blood draw mid October to see where I'm at with my antibody levels (hopefully non-existent!!), and my vitamin levels and then from there he's going to make decisions as to what the next step is if there's not enough improvement in the vitamins. I dont feel any different yet and one thing that is really bugging me is that I am still struggling to breath at times (this was new as of a month and a half ago, prompting my initial visit to this new doctor). I had lung function test as well as an x-ray and everything was okay. He did say he could hear crackling in my lungs, not sure what that's from but I have to assume its the acid reflux. Anyway, I am doing what needs to be done and I hope I am on the right track to getting healthy, finally! Thank you, thank you, thank you again for all of the help!!

Make sure your D is D3....good luck
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