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I Cannot Believe It!


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14 replies to this topic

#1 proud-armywife

 
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Posted 14 March 2010 - 05:38 AM

I am new here and very overwhelmed. I have found some relief in a diagnosis but some disbelief in accepting it. I have been diagnosed with latent spru. I have the malabsorbtion affects from the disease. It started with severe anemia-many years.(I also have very swollen lymph nodes) I have recieved iron infusions, blood transfusions, and an array of iron pills that I carry with me always. I have had to take six 325mg tablets a day, and now I know why. When my blood test came back "blaringly positive" I thought, she has the wrong person. I come from a family of chefs, we eat, none of us have these digestive issues. And honestly I was a bit angered they were testing when I did not have any of the symptoms. Well, I went to see the digestive disease doctor, he said to me, latent spru is rare and because your white blood cell count is low, I believe it is bone marrow failure.( I had thought that myself for years) But I will do the scope so we can rule it out.( battleing my way through military hospitals you have to rule everything out to move on) I went out to the car and cried. No-one truly knew around me what it has been like to not be able to function everyday,I force myself because my husband is in the army and gone alotsomedays I feel so exausted I could fall over and then to feel like you are back to square one.(no diagnosis) I guess at that moment the spru diagnosis was hope. And I felt horrible inside.I got up went for my endoscopy and prepared myself for the fight in front of me. If the scope came out negative, I would have to got through all of the years I have pushed over again, and that thought was so defeating to me. The building was beautiful and before I knew it it was over. My intestines look like cobblestone he said, they are very damaged you also have a hiatal hernia- I again am thinking you have the wrong person........ What do I do? When I eat things with alot of gluten, I feel tired, but on an everyday basis I have no idea if what I ate even has it in it. I am happy to have an answer but sad also. I have four kids and now I feel horrible that they too have the disease.... Thank you for letting me vent I appreciate that you are all here.
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#2 ravenwoodglass

 
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Posted 14 March 2010 - 08:19 AM

Welcome to the board. It is overwhelming at first but you have found a good place to get information and support. Read as much as you can and ask any questions you need to. Start out by going with as many whole unprocessed foods as you can. You need to avoid wheat, rye barley and oats. Many companies clearly label gluten ingredients, Kraft is one and Unilever also. There are also some stores, like Wegmans, that label all their gluten free food. It is getting to be easier to find more and more gluten-free stuff around. There is a lot to learn at first but it is well worth it.
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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)

#3 lovegrov

 
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Posted 14 March 2010 - 08:51 AM

You absolutely have to quit eating gluten. Most of the gluten you're eating is very obvious -- pasta, bread, many sauces, anything that lists wheat or malt in the ingredients. Just avoiding those will cut most of the gluten from your diet. And keep reading and studying to cut out the rest.

richard
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#4 BethM55

 
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Posted 14 March 2010 - 09:20 AM

A support group would be very helpful for you. People to talk to face to face, who live this every day. As you modify your diet and begin to feel better, it will get easier. I've been gluten free for 15 months now, still have days when it's hard to do and I despair, but I've decided that eating gluten is not worth the pain that follows.

Another good resource is livingwithout.com, and glutenfreegirl.com. Hang in there, you are not alone!
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Self diagnosed gluten intolerant, gluten free since 12/09.
Diagnosed with fibromyalgia about 15 years ago. Fibro symptoms have improved but not gone away with gluten free living.
Osteoarthritis, mostly in hands and neck and lumbar spine. Not sure if going gluten-free has helped that problem, but it certainly can't hurt. (Am very grateful that so far no sign of the RA that is devastating my mother lately.)
Considering a dairy free trial. Considering.

#5 sandsurfgirl

 
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Posted 14 March 2010 - 10:07 AM

I went through a really rough grieving process and still have some days where it's hard. The hope lies in getting better!

Please use the search function on here and read about withdrawals. There are lengthy threads about it. With all the damage in your gut you most likely will go through them. Also, you may have to go on a very simple diet for awhile. Many people have to cut dairy and soy at first and find that gluten free replacement foods are tough to digest for awhile.

I went through a 2 week period where every time I ate I felt sick, but I didn't freak out. I just kept eating simply, rested as much as I could and let my body heal. Your little army of gut repair technicians will be working round the clock to heal you once you go gluten free, which can be energy draining and tiring for you.

Tinkyada has a great brown rice pasta that even this Italian girl really likes. It's just brown rice and no funny ingredients.

Soups make great one pot meals.

Print up the list of forbidden foods and safe foods from this website on the home page and keep it with you. Read it over and over so you can memorize things.

You CAN do this, and when you start feeling better the clouds will lift and you will be happier about it.

If lots of foods bother you at first don't freak out. It is temporary! I was having trouble with xanthan gum and I freaked out because it's in so many gluten free foods. Well a few weeks later I challenged it and now I'm eating it fine. It took so many years for your guts to get like this, it will take time to heal them too. I didn't start to really feel much much better until week 5. I'm on week 8 and still have some symptoms, but way way way better than I was before.


Listen to Richard! He is right that you must cut out all sources of gluten NOW. Check your soaps and shampoos too because wheat is in many of them and then it gets in your mouth when you shower or on your food from your hands.
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Lots of doctors diagnosed me with lots of things including IBS, lactose intolerance, wheat intolerance, and quite a few of them threw up their hands in total confusion.

Had GI symptoms, allergy symptoms and unexplained illness my whole life.

Jan. 2010 Diagnosed celiac at the age of 40.
Ready to get well and get on with my life!

#6 boysmom

 
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Posted 14 March 2010 - 06:08 PM

Others have encouraged you already about the diet, so I'd like to address the guilt you feel about your children possibly (have they been diagnosed already too?) having celiac as well. I have 5 sons who, since we now have a gluten-free household, have all shown varying degrees of sensitivity as well. While I would wish that they did not have to deal with this, one thought has made all the difference for me: Because I have been diagnosed, the likelihood of their having to suffer 30 years of vague, diffuse symptoms with no real idea what is wrong is very unlikely.

My sons are all aware of the varying symptoms that this disease can manifest, and knowledge is power. If/when they begin to have symptoms they know where to start looking AND they know how to solve the problem on their own even if they can't get a doctor to consider looking. I take great comfort in knowing that they won't have to struggle for decades like I did before finally pinning down what is wrong. Because I got SO sick, they'll be able to identify the problem and change their diet early in their lives, and possibly avoid the long-term side effects this disease can eventually bring.
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#7 TrillumHunter

 
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Posted 14 March 2010 - 07:34 PM

I'm with boysmom as far as your kids go. We have a gluten-free house as well with improvement in "issues" all the kids had previously. I hope and pray each day that by avoiding gluten, the kids can avoid the OTHER autoimmune issues related to celiac. I feel like if I didn't do this and they had fertility issues or Lupus or whatever, it would be my fault.

Richard said it as plainly as anyone could. You have to stop eating gluten today.


Come back here and read around. There is so much information here. I don't know how I would have coped without it!

You can do it!
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#8 proud-armywife

 
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Posted 29 March 2010 - 08:55 AM

Thank you so much for your responses. In reading my entry I noticed that it was scattered. I am sorry. I had an endoscopy about 2 1/2 weeks ago. They told me to call in after 14 days, and when I got through the nurse told me that I need to wait for a letter in the mail it will contain the info for my appointment so the doctor can review them with me. My mind is spinning some...can you tell me what I may hear. I will post my blood results. I understand you all are sharing an opinion, I just really appreciate the input. I am much better if I can prepare. Does that make sense?
retic 0.4L (0.5-1.5)
wbc 3.4L (4.5-11.2)
hgb 8.4L (12.0-16.0)
hct 28.9L (35-46)
mcv 66.0L (80-99)
mch 19.2L (26-33)
mchc 29.1L (33-36)
rdw 18.0H (11.6-14.5)
plt cnt 311 (125-390)
mpv 9.7L (9.8-12.6)
iron 9L (40-150)
ferretin 1.98L (13-150)
erythropoietin 89.9H (4.2-27.8)
GFR 89....what is this?
all other values were within normal range
My intestinal endoscopy pictures came up looking like"cobblestone"- what does that mean? And I have a hiatal hernia. I do not have gi issues, I do not have heartburn.....what does all this mean, what should I prepare myself for?Thank you all for your help..and all of your responses. My family does not believe this diagnoses... can you help?
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#9 ravenwoodglass

 
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Posted 29 March 2010 - 09:35 AM

I hope they did a celiac panel with all the other blood work but I don't see one. I can't give you much input on your test results for the other items and you will have to wait on the doc for that but the 'cobblestone' is a good indication that they are on the right track looking for celiac. No matter what your biopsy results you would be wise to begin the diet. Since the biopsy is finished unless you have a celiac panel in your future go ahead and get on the diet. It could well normalize some of the low and high results you have listed.
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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)

#10 TrillumHunter

 
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Posted 29 March 2010 - 09:35 AM

Oh, the digestive issues will come if you keep eating gluten. That's what happened to me. I had many of symptoms of celiac that aren't commonly recognized--unrelenting anemia, neurological problems and such. I was diagnosed with pernicious anemia (b12) in my early thirties. It wasn't until I couldn't have any milk products and was SPRINTING to the toilet on a daily basis that I made the connection and got tested.

That's why I think gluten intolerance as a diagnosis is crap. :D

Your labs look pretty bad to me. Your ferritin is really low. Don't you feel bad? Like short of breath and dizzy and tired?

GFR is glomerular filtration rate. It tells how well your kidneys are functioning.

Really, you CAN do this. Even if you really love food it can be done and done well. On the other hand, untreated celiac opens the door for lots of awful and life-threatening illnesses.
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#11 sandsurfgirl

 
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Posted 29 March 2010 - 04:32 PM

Whoa your ferritin and iron are really low. Wolicki on here can give you advice about that. She couldn't tolerate the pills and had iron transfusions. Low ferritin and low iron seem to be common with celiacs from what I read on here. I'm waiting for my results to see if mine are low.

Cobblestone doesn't sound normal to me on the biopsy. If you want further confirmation, have them run the celiac blood panel. Mine only took 2 days to get results back.

I'm not sure if cobblestone is considered severe or what, but if there is ANY blunting, or damage at all to the villi, then he should diagnose you as celiac. Some docs are looking for all out war zones in there and there should be no damage at all. Eventually it will look like a war zone if you don't get gluten free, and they also could miss the worst spots.

I feel guilty about my son too. I think he is celiac. Getting blood tests this week.
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Lots of doctors diagnosed me with lots of things including IBS, lactose intolerance, wheat intolerance, and quite a few of them threw up their hands in total confusion.

Had GI symptoms, allergy symptoms and unexplained illness my whole life.

Jan. 2010 Diagnosed celiac at the age of 40.
Ready to get well and get on with my life!

#12 proud-armywife

 
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Posted 30 March 2010 - 03:16 AM

Yes I am a little tired I have my moments where I crash out on the couch and my hubby says..." have you taken extra iron pills today" Sometimes I think it must be a bug but I take a few pills and I feel better. To be completely honest this is how I have been for so long,It rarely effects me.But when it is bad, it is really bad and I feel extremely frustrated that I am 35 and feel like this. The last time I crashed out on the couch they told me I needed a blood transfusion. I have had many before and while they test the blood for diseases, I am very paranoid and scared to accept blood from someone else. I have already recieved 7 transfusions and I can't say it hasn't crossed my mind that maybe this has all happened because they missed something..... I thought before the celiac that maybe it was HIV. Sounds crazy I know but I guess in my head I knew I was sick and the doctors just told me to keep up the iron pills, the pills made me sick and so I felt it was my fault.Thank you for your response
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#13 proud-armywife

 
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Posted 30 March 2010 - 03:31 AM

Hi! I have taken the ttg test and also taken another. That was the first part of the diagnosis. My doctor said they came back "blaringly positive" I believe my ttg number was 39 I have no idea what that means... The military kind of shuffles people around, so I have not been able to talk to anyone about this, once the hemotologist called and said yes your blood panel is positive she told me I was released. It was only through this board I knew maybe I need to see a gi doc, so I asked for a refferal. Then I was sent out to another hospital to see the gi doc. I also went to an obgyn and had surgery to make sure that I was not bleeding out anywhere. You guys have been a wonderful source of imformation, I can gather my thoughts and questions and then go in with a little bit of knowledge which is good for me because if I process before I can have questions ready. Initially when I was told my blood test was positive, I had no idea what it was, so I was so happy they found something and then she released me and I had all of these questions with no-one that could answer them. I did try to see my primary doc but she has no idea what it is. The digestive disease doctors office called yesterday evening and said that he would like to see my at the end of the day today to discuss my results...... I know something showed up because she brought up my name when I called in Friday and when she looked at my record she said I would be recieving a letter in the mail and to call in for a followup when I recieved it. I didn't expect them to call me before I got the letter. I don't know what else it could be..... todays the big day. My life will officially change today- I am happy for the end, scared for the appointment, sad that I may not be able to eat my favorite things, afraid of gaining weight, relieved that something showed up..... I feel like a real basketcase!!! LOL Thank you for your encouragement, I appreciate it!
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#14 JNBunnie1

 
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Posted 30 March 2010 - 07:15 AM

Hi! I have taken the ttg test and also taken another. That was the first part of the diagnosis. My doctor said they came back "blaringly positive" I believe my ttg number was 39 I have no idea what that means... The military kind of shuffles people around, so I have not been able to talk to anyone about this, once the hemotologist called and said yes your blood panel is positive she told me I was released. It was only through this board I knew maybe I need to see a gi doc, so I asked for a refferal. Then I was sent out to another hospital to see the gi doc. I also went to an obgyn and had surgery to make sure that I was not bleeding out anywhere. You guys have been a wonderful source of imformation, I can gather my thoughts and questions and then go in with a little bit of knowledge which is good for me because if I process before I can have questions ready. Initially when I was told my blood test was positive, I had no idea what it was, so I was so happy they found something and then she released me and I had all of these questions with no-one that could answer them. I did try to see my primary doc but she has no idea what it is. The digestive disease doctors office called yesterday evening and said that he would like to see my at the end of the day today to discuss my results...... I know something showed up because she brought up my name when I called in Friday and when she looked at my record she said I would be recieving a letter in the mail and to call in for a followup when I recieved it. I didn't expect them to call me before I got the letter. I don't know what else it could be..... todays the big day. My life will officially change today- I am happy for the end, scared for the appointment, sad that I may not be able to eat my favorite things, afraid of gaining weight, relieved that something showed up..... I feel like a real basketcase!!! LOL Thank you for your encouragement, I appreciate it!



Ok, so let me break this down for you: Your blood test and endoscopy were positive. You have Celiac. Do not panic, we're here to help. Start by having meat, veggies, seeds, nuts, fruits, and rice. Anytime you want to make something you'd usually have on pasta, just use rice instead, even if it's a red sauce or an alfredo. You'll learn more from websites and us in time, but for now, just cut out all bread and use rice instead of pasta. You'll be fine, I promise!
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If you're going through hell, keep going. ~Winston Churchill

#15 em80

 
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Posted 31 March 2010 - 06:09 AM

Hey armywife - I'm also dealing with a new diagnosis, although not as new as yours. I've been gluten-free for almost three weeks now, but I had some time to prepare for it mentally because of how my regular doctor (who is no longer my doctor) handled the original blood test results. My first positive blood test came back right after Christmas and she told me to go gluten-free right away, before getting a biopsy to confirm. I wasn't able to get an appointment with the GI doctor she referred me to until early February, and he wanted to be sure I'd have an accurate biopsy because a positive result means such a huge lifestyle change. He had me do a brief gluten challenge and I had my biopsy about three weeks ago. I'm a total mess too! ;) Unlike you, I have TONS of digestive symptoms (see screen name) but I also have low iron, dizziness, fatigue, migraines, etc.

Anyway, since the process of my diagnosis allowed me a little more time to prepare for the reality of the diet, I'm sending you a link to a book that I bet almost everyone on this forum has read:


http://www.(Company Name Removed - They Spammed This Forum and are Banned)/Celiac-Disease-Revised-Updated-Epidemic/dp/0061728160/ref=sr_1_2?ie=UTF8&s=books&qid=1270043485&sr=1-2

With all the reading I've done over the past few months, Dr. Green's book has been far and away the most helpful thing for me because it really explained - to the extent possible - why Celiac can be so weird. I can't tell you how many times I would read about some random and seemingly unrelated condition in this book and a little light would go off in my head, like "OMG! THAT'S why I had that!" So, so helpful. Maybe even though you don't have digestive symptoms (yet!) this could help you make the connection between the symptoms you do have and the diet you're stuck with. And, more importantly, give you some ammunition to get your family on board!! They need to get it, too, and start supporting you!

The other thing I wanted to share is that the people on these forums are awesome and there's so much great info here. I was expecting, based on what I'd read, to start feeling much, much better after being on the gluten-free diet for a short period of time. Two weeks in, and I was still feeling awful, even though I'd already eliminated dairy, too. I was, however, still drinking coffee and alcohol (no beer), eating/drinking lots of soy, and eating all kinds of new gluten-free products - spaghetti, bread, etc. I thought all of that was safe! I spent a lot of time reading everyone's posts here and decided to try an elimination diet, so now I'm on my third day of having no coffee or alcohol, no processed foods of any kind (including gluten-free), and no soy. I've also cut out nightshade veggies and the onion/garlic family. I know that sounds super overwhelming (and it is!), but I finally feel so much better! The best part is, thanks to the forums, I'm sure I'll be able to have all that stuff again (obv except gluten) after my system has had time to heal. Progress, at last!

Sorry if that long list of eliminated foods freaks you out a little (it freaks me out too!), but I thought it would be helpful as you're starting out to know that you might make more progress, and faster progress, if you figure out which of the other potential irritants might apply to you - if only in the short term. I feel so much better, I don't miss them a bit. And it's not just my GI symptoms that have improved, it's the energy levels, dizziness and headaches, too.

At any rate, sorry for the super long post, but I just wanted you to know you're not alone out there and that arming yourself with lots of information is incredibly helpful. Read up, and good luck!!!
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