Celiac Work-up

[SharonP]

Hello,

I have just registered with this board. I am currently being "worked-up" for Celiac Sprue after a positve antibody test. The result of this test was a total suprise tome and my doctor since I am not of the "typical" group that usually gets celiac disease, in that I am East Indian. I have had a problem with anemia since I was in my teens and have been on oral iron therapy for decades without much success (I'm 38 now). I carry Thalassemia Minor trait, so it was not uncomman for me to be anemic. My doctor decided to do the test just for the heck of it because we were not achieving any results from the oral iron (which I was taking double doses of). I have since been referred to a specialist and last week had an endoscopy and a colonoscopy. I have not had a follow visit yet, so do not know the biopsy results, though I was advised to start a gluten-free diet. I also have Haishimoto's Thyroiditis and take Synthroid. In the last 3 months I have had a tremendous pain on my right hip and shoulder, especially at night. My legs feel like lead when I am lying down. I don't have the same range in motion that I used to have on that side. I have lost my sense of taste. Everthing tastes different now. My father has Rheumatoid arthritis and I am very worried that I have that also. All my aliments are auto-immune related and I'm just waiting for something else to go wrong with me. I was born in England and I have had a diet of biscuits and tea for the better part of 38 years. Sometimes, I don't even eat food but I must have my biscuits (cookies) and tea. I can't function with them. How does one deal with this?

I am receivng Iron intraveneously 3 times a week for 7 weeks. My teeth are another story in itself. I used a flouride treatment daily. I have terrible tooth decay. I am extremely weak and have no muscle mass. I am clumsy and can barely hold a pair of kitchen tongs without pain in my hands and wrists - I am a complete MESS! My head does not feel that it is attached to body!

Any advise on dealing with this is most appreciated. Please feel free to contact me via email at: ss214@cornell.edu

Thank you for your time,

SharonP

[Laura]

Hi Sharon,

Welcome! It sounds like you have so many different things going on that it's hard to know what symptoms a gluten-free diet might help with and what are caused by other things, but I do know of people who have found that their joint pain lessened on the gluten-free diet, and my own experience was that things I had always thought were just the way I was suddenly got lots better when I stopped eating gluten. So you may have some big improvements to look forward to.

As far as your tea and biscuits, there are gluten-free cookies available from several brands. They probably won't be the same as what you're used to, but give them a try. I like Pamela's best myself, but Mi-Del makes some (in some threads you'll see that some people are wondering if Mi-Del might be giving them problems, but I've been fine with it) and I've seen other brands different places. Look around in your local health food store and also online. You may be surprised by all the options you have.

[lauradawn]

I would definately say that a gluten-free diet can help. Most of the symptoms you complain of are listed at some point as a complication of celiac disease. If your blood work showed anything that indicated a chance, and you've already had your colonoscopy and endcoscopy. I would start the gluten-free diet if you can. How long do you have to wait for the reults? if it's really soon, you could wait to see the Dr.

Much success to you, sounds like you are miserable.!

[Ruth]

Sharon,

I also suffered from anemia that was not being helped by oral supplements (also a double, at times triple dose). I'm also 38. Finally, after years of anemia and "weird" ailments... joint pain, pain in my arms, hips, legs (diagnosed as fibromyalgia) numbness in my arms and hands (I dropped everything, lost my grip easily) and eventually my legs, dizziness, etc.... I was diagnosed with celiac disease.

My blood tests were negative... my biopsy was positive.

I just celebrated my 1-year anniversary gluten-free... and I feel great! All the symptoms listed above are gone... or much better! I also had gastro symptoms but never thought to mention them to my doctor for all these years... the gastro problems were managable and "what I was used to." Now that I know how it feels to be normal, I realize I did have some "classic" celiac disease symptoms.

By the way...Nothing, except the anemia, was attributed to celiac disease by my doctors... but I'm better now!

Best of luck to you! It sounds like you may have found your cure.

Ruth

[SharonP]

Hi Laura,

Thank you for your welcome. I really appreciate that. Part of me just doesn't want to accept that I have something else wrong with me. I hardly eat bread, I hate all cereals, I don't much like food-period, so I know my diet is a contributing factor to my ails, as is genetics. Thanks for the info in the cookies, I'll definitely ask my supermarket to point me in the right direction. I also know that stress compounds everything and maybe I should learn to "chill out".

My family is going thru another crisis, in that my niece (my brother's daughter') is the first reported case of Mad Cow Disease in the US. Her story has been in the news media alot. My brother relys in me do get as much publicity about this disease and her tremdenous suffering, and I think, I am just am pretty much overwhelmed by alot of things. My father is another, who is having a really hard time with Rhematoid Arthritis. Sunday marked the fourth year anniversary of my sister's death who died from Non-Hodgkin's Lymphoma, another autoimmune disease.

Phew, that was a mouthful. I am pleased I came across this website.

Thanks for taking the time to respond to my post,

Sharon

[SharonP]

Hi Laura,

Thank you for responding to my post. Yes I am miserable..... Although, none of my ailments are life-threatening they do take a toll, especially when you think you are becoming a hypocondriac(sp) and wonder if all my symptoms are in my head. You are afraid of reporting all your aches, pains and concerns to your Dr b/c he may just think your nuts. For 10 years, I ate Halls cough drops, craved them like someone would crave drugs. All the doctors I told just laughed and told me it was a weired habit to have but I was serious when I told them my concern. Not one of them told me that I was probably due to my anemia and this type of behaviour is called PICA. When I first went to my haematologist a couple of months back, he was the first person to ask me if I ate anything wierd like ice or dirt. I was releaved to know that my cravings for Halls was beyond my control and now a couple of months later, I can't stand to even smell someone eating anything menthol.

Yesterday, my stomach was churning all day. I don't know what I ate, I was so uncomfortable. I used to take Immodium everyday as a prophylaxis b/c I knew my stomach would act up. Over the years, I have had, upper GI's, lower GI's and Small Bowel series tests, nothing ever showed. I was thought to have IBS or Ulcrative Colitis (UC runs prevalent in my family as well). I just find it hard to accept that gluten could have been the culprit all these years, but my symptoms were sporadic, in that it would come and go.

I guess, I am going to have to make some adjustments one way or another. I;m sure my husband is going to sick and tired of me and my complaints sooner or later - sigh....

Take care,

Sharon

[SharonP]

Dear Ruth,

I see you are a newbie too - welcome to you. It is indeed a relief to see that others have/are experiencing the same symptoms as me. I forgot to mention in my original post that my memory is REALLY bad. I have very poor concentration as well. Is this a symptom of celiac disease? I know it is related to Hashimoto's disease. I am just frustrated at having to go to some many different physicians. One for my thyroid, one for my blood, one for celiac disease and my Primary Care Physcian for everything else. Is there any such thing as a Immunologist? I'd prefer to go to a doctor who can treat and help me manage all of my problems, because, it seems like they are not all on the same page. What is my main condition and what are the other underlying conditions? I want to know if one thing exarcerbates another.

I find it so very hard to believe that gluten can make someone have all these symptoms. I am so pleased you feel "normal". I hope I can get there one day too.

At 38, I feel that I am going to have a future of chronic ailments and I am pretty depressed about it, but life goes on.

Have a great day,

SharonP

[Karina]

Sharon,

I just read your post and can say I understand at least to some degree how you feel. I identify with many of your symptoms and I too, am waiting on the results of my endoscopy, which I had done yesterday. I am 30 and since the birth of my daughter 2 years ago, I have dealt with one illness after the other. It started with a stomach virus, just days out of the hopital, followed be headaches that I had ver had before and lasted for approx. one year (every day). I had an MRI of the brain which was normal, because my doc. wondered about MS (I had weakness in extremeties, and tingling in arms and legs--I was clumsy, aches and pains in legs especially). Those symtoms did improve (I don't know why), but then I got frequent sinus infections/colds. I was the first person to get sick and my house and the last to get better (still am). I have bloating, gas, diarrhea off and on, and abdominal pain (some days are almost symptom free--other days are bad). I have always been VERY thin despite having a great apppetite (I LOVE food!). I am the envy of all my friends (now my eyes are rolling). Oh yeah, and this past year I had some routine blood work, and the iron was low and I was borderline anemic--doc doesn't know why and didn't seem to concerned--said my energy levels seemed to be fine because I was able to chase my two toddlers around his office! I don't WANT to have celiac disease--but I have to admit it would be nice if it explained what has been going on with me. I should also mention that I have had joint problems since early adulthood--and my first year as a nurse I was convinced I had leukemia or something because I had major flu-like illnesses like eight times in one year, later I figured it was just because I was coming into contact with so many germs at work (now I wonder). I also was diagnosed with hypoglycemia a few years ago. So, Sharon, I hope that you find the answers to what is going on with you. People here are very helpful and caring. If you are ready to try gluten-free--go for it! What can it hurt? I should take my own advice--I have yet to start the gluten-free diet.

For any others reading this, I am wondering how common it is to have only one or two antibodies on the celiac panel come back positive? I believe it was an IgG that was in the 80's, and onw other thing was a high normal 2.0? As I said I havn't gotten my endo results back--the doc said he was going to take 6-9 biopsies and go as far down as he could. Could there be other reasons this level could be elevated? I know this is a question for my doc--I just thought others might have some experiences of their own to share.

Karina

[SharonP]

Hi Karina,

Sorry to hear that you are suffering some of the same ails and then some.... I rarely have headaches so I'm thankful for that. It can't be easy with a 2 year old. My son is three and I feel my symptoms got worse after I had him, not to mention I went into pre-term labor at 32 weeks and had him 10 days later. My body just couldn't tolerate the pregnancy anymore. I have always been on the weak side, with fainting, blackouts, dizziness - heck I'm permanently light-headed. Never did any sports or go to the gym, though I have considered strength training.

I developed pregancy induced Carpel Tunnell in boths wrist, which has weakened them further. It is pathetic - can't even open a bottle of pasta sauce!

You sound like you have been thru the ringer as well and have not found a satisfactory explanation either. I've also had MRI's, Cat Scans, Ultrasounds, Nuclear Scans, you name it, I've probably done it over the years. You obviously have a very fast metabolism and probably lost your baby weight the next day. It was easy for me as well and I have 3 kids. So many other conditions are related to celiac disease and one of them is thyroid disease. I urge everyone who has celiac disease to have their thyroid levels checked. You Thyroid controls so many functions. I am prone to infections (bladder and yeast) but haven't had a cold in ages. It's weird.

I hope your biopsy results come back negative as well as mine. I'm not too I understand the meaning of the two different antibodyies. On my Celiac panel, one was in range and other other was a very high positive and indicative of sprue (is there a difference between Celiac Disease and Celiac sprue?

Good luck Karina,

Best,

SharonP

[Ruth]

Dear Sharon, Karina and others...

After hearing more of your situations I realize now that what I was feeling could indeed be considered "normal" for celiac. I have 3 children... and yes, the pregnancy weight came right off... in fact I used to eat as much as (or possibly more than) my 6'2" husband (I'm 5'1") and not gain a pound. I also had carpal tunnel in one wrist after one of my pregnancies, then the fibromyalgia kicked in. I craved ice constantly...and went for every imaginable test. So many in fact that when we received the Celiac diagnosis we felt like having a party! It could be so much worse.

Sharon, I'm not at all familiar with your other condidtions, but I hope that a gluten-free diet will help your pain. I understand the frustration with so many doctors... it would make sense to have all the sypmtoms analyzed together to come up with one "whole body" solution.

Karina, regarding your question about the blood screening, all of mine (IGA, IGG and tTG) were NEGATIVE for celiac. And after my biopsy the doctor said he would eat his hat if it didn't come back positive... he could see the damage during the endoscopy.

.... Also, all of my children were 2-4 weeks early, my third was the latest...after 4 months on bed rest... I have no idea if this is related to celiac, but it is another commonality.

Since my diagnosis 1 year ago, my sister and daughter have been biopsy diagnosed. My daughter had NO symptoms but elevated blood tests.

Take Care,

Ruth

[Karina]

Sharon,

Yes, I lost the weight without any difficulty after having both my babies--I nursed them both for over a year so I'm sure that contributed to the weight loss. I had quite a time trying to gain weight during my pregnancies, and I had to take iron. My last child had to be induced because the placenta started deteriorating--and the doc said he didn't know why because I didn't meet any of the risk factors for that (diabetes, smoker, drugs, etc). I did have one of my Thyroid levels come back abnormal. It was the T3 I think, and the doc didn't really know what to make of it, everything else was ok. Interesting how all this is like putting a puzzle together, isn't it?

Ruth, thanks for sharing about your lab results. I don't know what my small bowel looked like (doc was long gone when I woke up). It's good you are finding out about your kids--you may be able to save them from a lot of illness and grief!

karina

[SharonP]

Dear Ruth and Karina,

The commonalties we share are quite surprising to me and a relief at the same time. It is very difficult when you have an infant and your health is decling for reasons you don't understand. I nursed my last for almost a year as well. For me, I couldn't wait until the pregnancies came to an end. I hated being pregnant from the minute of conception to birth. I was sick 24/7. People always tell me they can't believe I have 3 kids etc., it's either good genes or bad immune system or both!

I will get my endo/colonoscopy results next Thursday when I go back for a follow-up visit. I'm just praying the biopsy comes back negative and that there's a good explanation why my IGA was positive. Though when an antibody show's up it usually means that you've got it or you're going to get it.

My daughter is 10 and she too has had a lot of Gasto problems. She is severly lactose intolerant. She weighs a whopping 541bs and looks like a stick! She had and endo/Colonoscopy last year to check for Celiac but the biopsies came back negative although there were several areas in the colon that we flat and or smooth. I don't recall her Dr. doing a Celiac panel and when I mentioned it my doctor, she told me to tell her Dr. to do one. My daughter is a very picky eater and her lactose intolerance doesn't make things easier. Her cousins who are the same age are starting to go thru puberty but she is not. She is a little unhappy about it and I wonder if her failure to put on weight will delay her. I guess these are questions I should direct to her pediatrician.

One other thing I forgot to ask is - does anyone have these tiny bumps on their palms and soles of their feet that just just come, break and go- sometimes in clusters? They look like teeny tiny warts. I have a few in each of my palms especially around the thumb area - itches too. I would understand if it were just my hand 'cos I use a lot or harsh detergents and cleaners without gloves sometimes but they are on my feet so, there goes that theory.

What next I wonder.

Thanks for listening,

SharonP

[Ruth]

Sharon,

I don't have the rash you describe, but check out the Dermatitis Herpetiformis (sp?)section of this message board. Sounds like what others have.

Take Care,

Ruth

[Guest aramgard]

Sharon, I have had dermatitis herpetiformis since I was around 14. I am now nearly 70. I was only diagnosed with celiac disease 3 years ago after I developed the intestinal part of the disease, which I may not have developed if I had been properly diagnosed to begin with. But 50 years ago no one understood the dermatitis or celiac disease. What you have sounds like what I had, except my rash was all over my legs, arms and face and itched terribly. So-o-o, it has taken me 3 years of being gluten free to get rid of most of my antibodies and most of my rashes. Take heart, a gluten free diet does work, it just takes a long time if you are misdiagnosed. Shirley