proud-armywife

Just wanted you all to know that with all of your good advice I was able to stand up to my doc and ask to see a gi specialist. I had the appointment yesterday.Even though I have my paperwork blood and biopsy results from March 10 the doc wants to do it all over due to my current issues. My hormone levels all came back normal and as expected my blood results were sent from the lab flagged this morning. My blood levels from yesterday were HGB 7 HCT 25 and MCV 67. Sadly I was happy to hear that it was this low....it justifies my weakness. The issue I am still having is bleeding. I started the Premarin Yesterday morning and exprienced very heavy bleeding yesterday and all night. I took a second pill tis morning. When will it stop? The dose is 1.25.When should I call my doc and ask her for another solution? The gi doc does have a sense of urgency which makes me feel like I have finally gotten to the right place. And if not for your help I could have never said that the care I was recieving was unacceptable. Thank you all for the encouragement.

I just wanted to add that I have this issue as well. It is very loud grumbling and sometimes it is so loud it wakes me up......it doesn't hurt it is just annoying.. Oh the joys of celiac...LOL

I don't live on base....wish sometimes we did. We own a bit of land which makes it hard. Wanted to let everyone know that I went to the doc today. I lost 2 counts in blood.(24) I explained the symptoms. I was precribed medicine for inner ear problems. She said the blood count wasn't as bad as she thought it would be. And it is my inner ear. What is the definition of insanity? Doing the same thing over and over and expecting different results............I don't know what to do, I wish I could just get help. I just don't know what to do.I don't feel like this is inner ear. I take three iron pills a day-and I still dropped two points. I don't know what to do. And did I mention trhat the meds prescribed probably aren't gluten free. But take them for now to solve the issue and deal with the fact that the meds poisoned me later..........Am I crazy? Maybe it is my inner ear. 24 blood count is low right? ferritin was 1.18 I feel like I am crazy.........

Thank you all for your advice. We recently moved and I have not had a chance to push for a doc here. It is exhausting trying to push your way trough the system. I have been practicing a gluten free diet for over a year. But with that I have to add that I have a family that does not understand the disease, and my 4 kids are a bit reluctant to change their eating habits. I have had slips-not knowing that the food had gluten, and I am thinking the cross-contamination thing may be affecting me. I am very isolated here, and I don't have any support system in place. My hubby is gone for awhile. And really I feel like they diagnosed me and sent me away. Very frustrating. I take integra f which is wonderful and my last iron infusion was 1700 mgs a year ago.My new doc handed me pills and said take these three times a day! You know how it is... I am very lean with saddle bags and with my hubby gone I wanted to slim them down and look good for his return. I got an elliptical and committed myself to 20 minutes every other day. I never couldn't move something before or run somewhere, but in the past few years I have really lost strength, memory,and it has changed me alot. I was told recently by a nurse that the excercising to my body was like someone with anorexia. And it is not a good idea for cardiac reasons.There are some days when I feel like I am moving so slow my system is just going to stop-I just feel very very much alone, I am frustrated, and I am so tired of thinking I'll go to bed and tomorrow I will feel better and that day never comes. I have four little children three dogs and no time for this. I really am trying very hard.Thank you for listening and all of your replys it means so much.

yes I have had my thyroid checked, it is borderline high and fluctuates last they checked. Not enough that they wanted to do anything though. Also had laproscopy to check girl parts with no significant problems.

Heather,

Hoping to contact you about your doc in Stafford. I live Stafford and am looking to find celiac specialist. I am a military wife- not sure if they take tricare but would love your info. Thank you so much

I am diagnosed celiac with severe malabsorbtion issues. Anemia-being the worst. I am hoping you may be able to help- I started to exercise recently because I have become very weak. Within two weeks of starting I gained about 10 pounds and my period went awaycompletely.Also got a very intense yeast infection that was difficult to get rid of. The physical exercise is very difficult as my blood count recently was 26 and ferritin was 1.4. I stopped because of the missed period and weight gain. Two weeks after I stopped I have had a VERY HEAVY LONG(14 day) period, dizziness, nervousness. I have dropped about 5 pounds and I have joint pain mild shoulder pain- what in the world is going on. Have you experienced this? I feel like I am an old person. And my doctor doesn't understand this disease.(military spouse) HELP!!!!

Hi,

I equate having this disease like being pregnant-if you are a girl which I think you are, it is all you can think about all day and because we are hungry we of course think about it all the time. I don't know how sensetive I am to Gluten or wheat or barley or oats- I do know when it is really bad my eyes get severely bloodshot and I feel like I was hit by a mac truck- but I am moving slowly. It's ok. It will be ok. We all have to find our own pattern in life to deal with this disease. I have not found mine- But I have to allow myself time to find a way. There is not an easy answer- and in fact I wish I could take a pill and have this go away, I feel personally like that would be so much better. I'm probably not the best person to talk to because I am not gluten free- I have only been keeping food journals of things that make me tired so I don't eat them. But I feel overwhelmed when I think about taking it all away for good- so I am going slow. I need to for my sanity and kids. All of us is different, and your husband cannot even begin to understand, I brought my hubby into the grocery store and asked him to get my some snacks that not only are gluten wheat oat and barley free but also not manufactured in a plant that does. He looked at me and said- I'm sorry. I am completely overwhelmed. Me too I said and we left. I know that you will find a way through this sensetive time and I pray for us all that more awareness and products are made available. Good luck and I'm saying a little prayer for you!!!

This month my period didn't come. I have a few weeks left in the month, but normally I get my period right around the 15th. (took a test-neg)I have not been horribly strict with my diet, although I am more aware- I am moving slowly into this. I have had alot of stress, but I have never not had a period at all, except when I was pregnant. I did have missed periods in basic training too. Is this a normal side affect? Should I contact my doctor? I have the symptoms, sore chest, moodiness and hunger. Thank you in advance I appreciate your input.

I have seriously thought I may suffer from narcalepsy (At home. I feel like I could just pass out, like slow motion, sometimes my time perception feels distorted. It is hard to explain. It comes and goes I never have it for days only hours and the extreme reaction passes I drag after that. I find this to be the only thing that makes me want to adhear to the gluten free diet. Trying to keep the house clean running after kids, it is so hard for me to not be able to finish what I need to get done, and many times as silly as this sounds I feel so useless. But since I have found out this is what it is, I am trying to do right. I also feel like my body is shutting down during these times. I literally have called my mom an RN and told her I don't know what is going on with me, but I feel like it is struggling to operate. I swore I would die before they found out what was going on. Crazy HUH? All these things that Gluten does.It is still hard for my to believe that this could cause so many problems, and it makes me sad for people who are struggling and have no answers.

Hi! I'm Proud-armywife and I am a gluteholic!

So what do you think of this machine? Steep price, but maybe it will help me. My family is bread eating crazies! And I am considering this option. I know you are stuck buying their mixes frankly it looks so yummy I watched the demo and drooled!!! LOL I have not eaten any bread since being diagnosed... Any thoughts would be so helpful!!

I am there with you MA Hope you have a better day. I wish I could take my magic wand and wave it away- I have not committed myself to no gluten forever. Sad I know. But I just can't believe all this either. It will be ok. You will find a way, it will take time, you may slip up but in the end, at least we know right? It's your choice what you do with your life.

I haven't been here long, but I just wanted you to know that I am sorry- I hate feeling like that. Please know that I am sending hugs and wishing you well. I kind of remind myself during these times one day, one moment. Tomorrow is new-wishing you well.

A.Duodenum Biopsy

-variable villous abnormality with cryptic hyperplasia, increased intraepithelial lymphocytes, and an increased lymphoplasmacytic infiltrate in the lamina propria.

findings:Gastric Mucosal abnormality characterized by erythema

I am sorry about your other issues, I too have gerd due to a hiatal hernia-how could I also not know about this!! LOL It seems one more thing right now is too much! I admire your strength! And I hope one day I will be able to give the advice out. I made a decision yesterday. Not knowing how high my blood tests were, they are still at the hemotologists office. I am going to eat food marked Gluten free. Stay away from things I know are glutenous. But the cross contamination, I won't use the toaster or the same spreads, but I intend on eating foods that have no gluten ingredients. I have an appointment in 3 months. And when they draw blood, I will know if I need to pull back. The hemotologist said the test was "blaringly positive" but I don't know what that means. One step at a time so NO GLUTEN INGREDIENTS!! I just have to get through that for now.Thank you again I hope I can return the favor of reassuring words soon.

Thank you so much for all of your encouragement, it actually felt so good to just say what I was feeling inside, I try not to burden my family. I am grateful to you all and appreciate you sharing your experiences

I am no pro to this I am new here. But I have read alot about the gluten challenge diet. Also many people have unclear results on their tests and even if you had it done and it were negative the only true test is to eliminate the gluten and determine how you feel. I always felt that something was wrong inside me, but I didn't have any proof. If you feel like this is it, try the challenge- it may change your life, and you could feel so much better.I wish you good luck!

First, I have been diagnosed through biopsy and bloodwork.Second, I have the malnutrition affects of having this disease. It has affected me much like it anorexia effects someone. It is somewhat of a joke around friends-I have four kids and they all say-so what do you do throwup in the toilet? And they gesture to their mouth with there finger. It is hurtful.

To say that I am terrified of being fat is an understatment in truth. I have been very disciplined when it comes to how much food I eat. And frankly my husband eats horribly and over the 12 years we have been together- and having kids and a budget -I caved. Although I eat junk- I am very careful on how much I consume. I place a good handful on the counter and work on it for awhile. I never eat out of the bag, I would eat the whole thing! Where am I going with this?...I'm asking myself to be honest.

What determines how diligent you have to be? I saw a nutritionist and she addressed my anemia-telling me to eat things like raisin bran and grapenuts. I reminded her about the celiac and asked if those were ok for me to eat and of course, I already knew she said no. She never told me about labels and cross contamination. I asked her do I need to worry about cross contamination? She said like what? Like the toaster-yes she says. If not for this forum I would not know anything about this. She says to me-you don't have diarrhea so you must not have it that bad. I felt myself shutter after those words..... I felt like my heart trouble, my inability to move, dizziness, ringing in ears, lethargy,burning limbs, restless leg, headaches, brain fog, forgetfulness, low white blood cell count, being sick all the time, nausea, hair falling out, and depression, meant nothing. I have spent 12 years telling people that I feel like an old person. I have been known to say, I am young -there has got to be something wrong with me.

WHY is there no information given to patients? Why are we not treated like something is really wrong? Why am I sitting here feeling so alone, I don't even want to talk to my friends because right now I am so annoyed with myself, I don't want to annoy them-I feel so frustrated. Where do I begin, I cleaned out a cabinet I have a shelf in the fridge... I live off of yogurt and naked drinks- I'm sick of yogurt and naked drinks!( I tried nu thins-I hate them) Why are things made with Gluten ingredients but are also made in a facility that has wheat and other things.Why would you even consider marking them gluten free with a small allergy tag in the back- Can I eat this? There is no doctor out there that has told me what I should be doing! All they say is no gluten barley or oats-THANKS! WHAT DO I DO! How anal do I need to be- And to be perfectly Honest Right now I FEEL like I REALLY DON"T CARE ANYMORE!!! I truly just feel like I could give a you know what. I DON'T GET IT.I need someone to sit me down and say-this is what needs to happen, so I can have a goal to work towards- a clear definition of what I have. I have no diarrhea but honestly sometimes I wish I did so that I could associate the food with pain. I can't tell if I'm eating it. I love food-my dad is a chef my mom cooks too-it is my passion. People come over I cook a ton of stuff it makes me happy. I need help, and the military doctors I have seen- treat me like a number, not a person. Please help me. Where do I start.....What do you like to eat, what do you regularly buy? What do I do? AM I crazy?

In light of finding your post yesterday I started the task of cleaning out a cabinet that I will stock all the good foods you have suggested. I am moving onto the fridge today where I will claim a few shelves. I also made an appointment with the nutritionist a few weeks ago. So maybe I can come back with some good info I can share.

Yes the rumbling!!!LOL That is one of my side affects too! And nausea which I thought the anemia caused. I got a 1700mg infusion to get my blood levels back to a somewhat normal state-it worked great. All the other infusions only worked like a patch dropping away quickly. Anyways, that is when I felt the real tiredness of the disease and realized something else was really wrong. Thank you again for your response I am writing down your suggestions. My family comes from a line of chefs and when I figure this all out-I will have to share some Gluten free recipes with you all! Have a great day!

OH MY GOSH!!! I specifically came on the board today to see if anyone had any ideas about this topic!!! I have also been newly diagnosed. Found through unexplained anemia! I Thank you for your post! I wanted to add, that I thought also that I had no symptoms or latent celiac the doctor said. But I have been able to identify a few things recently that have happened all along and I accepted them to be "normal". You may or may not have that reaction. I do not know enough about this disease. I feel like I have read a million different things but where do I begin if I can't even tell I am eating it? I didn't even read the other responses I was so happy to see someone going through this like me. I had very stong positive blood tests and biopsies, did yours come back positive too? And I also wonder how strict you have to be..... I am trying to do this. It is so hard! My hubby came home with subway- my favorite sandwiches. He got it for him and the kids-and I ate it! I have been trying not to eat gluten but I could not resist! I feel like a drug addict! I hope we can find our way through this. I went into whole foods and trader joes yesterday and left out of complete frustaration. I was so overwhelmed- I could have cried. You have certainly given me some hope for today.I will be looking for your posts.I am sending happy thoughts your way and good luck.

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!

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

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?

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.