New To Site- Looking For Advice- Long Post!

[chaddwell]

Hi,

I am new to this site and here looking for info. I am 29 years old and have had many symptoms for about 8-9 years, probably longer if I count my childhood issues. I am 5'8, approximately 125lbs. I recently found this site through the web while searching for info on Celiac. I am somewhat familiar with Celiac disease because I was tested for it in 1999. I had the panel done and showed high positive on the EMA test, all others were negative. This was followed up with an endoscopy which was negative for sprue. The panel was repeated in 2002 and all tests were negative. I have read recently that the EMA is now being replaced with the ttg test since they both measure the same tissue damage and my second panel in 02 had the ttg not the EMA like my first panel. My husband said that since they both measure the same thing it shouldn't matter that the tests were different. I was not on any gluten-free diet for both panels. My doctor also had me do hemoccult cards. Does that measure fat in the stool as well or just blood? It was negative for blood and I don't remember getting any other results from it regarding fat or whatever.

My doctor said he didn't suspect celiac and mentioned IBS which I really don't think is my problem.

Here is an extensive list of my symptoms since childhood. It is long but I wanted to report them to give complete info and get an accurate response. These symptoms can be a sign of many issues but I have been tested for lymes, thyroid, lupus, cushing's diease, and hormone imbalance. All are negative except I have had abnormal labs for hormones over the years. When my periods were irregular I was not ovulating and my progesterone was low. Since having my baby in 03 I have regular periods every 28 days but still have the same symptoms. My testosterone has been mildly elevated once. Two docs had said could be PCOS and one said no it's not. I do not have ovaries with the many cysts that some people get with PCOS. But I did have surgery in April to remove a 5.3cm dermoid from my left ovary. Actually, since I had that removed my hip and knee pain have been gone except for an occasional episode recently. Could that have been from the dermoid or coincidence? Hard to say...OK, here are my symptoms:

Skin tags noticed 2005

Urinary incontinence 2003???

Petechiae 2005- noticed May 25th

Hives- sporadic and unexplained

Excess neck/abdominal fat

Headaches/migraines More frequent

Sharp intermittent head pain

Tingling/numbness sensation in tongue 2005

Chronic runny nose 2000??

Allergies

Puffy eyes upon waking and throughout the day

Fibrocystic breast- lump and pain 2004

Dizziness when eating 2004

Hypoglycemia

-Shaking/trembles

-Palpitations

-Sweating/flushing

-Irritable

-Dizzy/lightheaded

-Sleepy

-Decreased concentration

Sweet cravings 2004

Flank pain

Leg cramps

Nausea

Pelvic/abdominal pain

Mitral Valve Prolapse

Abnormal EKG

Prolonged bleeding time 2004

Bruising- unexplained 2004

Heavier menstrual cycle 2004

Hip and knee pain- bilateral 2004

Restless sleep and numbness in arms 2004

Anxiety/irritable/moody 2004

Loss of muscle tone 2003

Right eye irritation- bumps/sties, itching, dry 2003

Floaters/spots in vision 2003

Night blindness Over the past few years

Edema- unexplained- left calf 2001

Difficulty focusing/memory 2001

Infertility 2000

Decreased libido 2000

Hot flashes 2000

Night sweats 2000

Fatigue 1999

Acne 1999

Hair loss/thinning 1998

Spotting and menstrual irregularity 1998

Hirsutism

Dizziness/lightheaded

Brittle nails and white spots

Ringing in ears Most noticeable in 2004

Raynaud’s Syndrome Childhood 1980s or 90s

Mild scoliosis Childhood

Abdominal bloating/distention Childhood

Palpitations/chest pain Childhood

I would also like to mention that I had two complement levels (immune function) checked on a few occasions last year and my C3 and C4 were low. Doc didn't feel it was of importance though. I read that malabsorption can be a cause for low complement levels. I had a lipid panel done over the summer, everything is normal but noticed my triglycerides were at 38. I was surprised at how low they were. My cardiologist wasn't concerned but he did say they were the lowest he's ever seen. So me being me I researched low triglycerides and also found that it can be from a malabsorption problem. I also looked at my lipid panels over the last several years and each one shows my triglycerides lower than the next. My total cholesterol has decreased some too. With those two things pointing towards malabsorption it brought me back to Celiac. I am going to see an allergist and a GI doctor again about being retested for Celiac disease.

Has anyone else had an issue with low triglycerides and/or complement levels? How about PCOS or hormone imbalance or at least the symptoms of it like I have? Is this caused by Celiac? I know it can be manifested in many ways. Does anyone here have the symptoms I have/had?

Are there new tests or additional tests I should ask for besides the Celiac panel? Like many of you, I have been dealing with this for a long time and want to get the most testing I can get done at one time.

Any other additional info you can provide is appreciated. This is a long post. Thank you for taking the time to read it. I'm sure with all the info I wrote I forgot some stuff along the way Please feel free to ask any questions.

Channon

[Guest Viola]

Many of these symptoms are consistant with Celiac Disease as a lot have to do with vitamin defficiency. Skin tags ... I got rid of mine by going on a vitamin A&D combination. Cramps are consistant with low calcium absorption. Cronic runny nose and sharp head pain is consistant with sinutitis. I find using a decongestant in the morn and one at night help that. Allergy pills will frequently make it worse, although I take one everyday during the summer months.

Have you tried the gluten free diet for any length of time? Although if you are continuing to under go more testing I would not go gluten free until the testing is finished. There is a genetic test for Celiac Disease. You don't say which country you are from. I know they are testing in the U.S. for two genetic markers. That could rule out Celiac completely or rule it in. I don't know whether you can get that test here in Canada.

So many of those symptoms are consistant with the disease, even if they don't find an answer I would try the diet for a good six months to a year to see whether it is helping or not. But be advised, it isn't easy and you must rule out all gluten for it to be effective, that includes any make up you use on your hands and face, medications etc.

It's pretty late for all the people from back East to be on, so you will likely get more responses and suggestions in the morning

[chaddwell]

Hi Shirley!

Thank you for the reply. I am from the US. I am living in NJ at the moment but from PA. I have wanted to be checked for vitamin and mineral deficiencies for a long time but it seems that no one thinks that is the problem. It may show something, it may not but how do we know for sure? I hate when doctors do that. My current insurance is excellent too.

I don't get cramps in my calves as nearly as much as I used to. It would be in the middle of the night. Gosh it's painful. I have to get out of bed and walk to get it to subside. Then my calves are sore for days. Feels like pulled muscles.

No, I have not tried the gluten-free diet although I'd like to. My husband suggested I try it anyway regardless of the tests results. I am going to wait though until after I see the doctor. I know it will be hard for me because of the stuff I like to eat now! Oh my gosh, thank you for telling me about make up and stuff!! I didn't think of that. I have to read up on gluten though and find out what other names it can be under and what it's in.

Is the genetic marker testing something from the doctor or that I would have to purchase on my own from a lab?

Do you have Celiac disease? Thanks again for writing.

Channon

[Guest Viola]

Hi Channon;

Yes, I have Celiac disease, I was diagnosed over 16 years ago, but it took over 20 years to get the answer. I'm really not sure about the U.S. medical genetic test. I think the ones that I have read up on got their own lab test, but can't be sure. There was a thread going around about it awhile back. It would be under the testing site. You could do a search on it, or I'm sure some of the morning people will come up with it for you. Everyone is very good on this site and try to help in any way they can.

There are also lots of posts in this site that give you web addresses for gluten free lists, for make-up, medicines, and just about every product you can think of. Also tons of yummy recipes as well .. although you will notice the difference in many of the products. It is a lot of trial and error, at least it was for us old ones, now there is so much information out that it is much easier.

Keep us posted .. we are here to help if we can.

[kevsmom]

Hi - and welcome to the board!

I have found a great resource here and wonderful support. I have only been diagnosed for 7 months, and have learned almost everything about Celiac that I have here.

I suffered from a few of bouts of prolonged diarrhea and weight loss a couple of times in the past 4-5 years. Colonoscopy's showed nothing.

Over the years I have also suffered with decreased concentration, infertility, irregular menstrual cycles (once went for an entire year without!), now that it is back I have very heavy menstrual cycles (I guess it's making up for lost time).

In April I went back to my Gastroentestinal doctor for another bout of diarrhea. In 3 months, I had lost 30 lbs., and was now going to the bathroom 20-30 times a day. Get Out Of The Way!!! At this time, he decided to do a Celiac panel, which turned up EXTREMELY high. I don't know why he waited so long to do this. I should have insisted on it sooner, but I didn't want to know. My brother has had Celiac for years, and my father had an iliostomy for ulcerative colitis decades ago. I don't think they tested for Celiac back then, but I personally think that he probably had it.

At the same time this was going on, I was experiencing unexplained bruising. I was sent to a Hematologist. Bloodwork showed that I was very anemic, and was suffering from malnourishment and malabsorbtion. My bleeding time was so prolonged, that I suffered a 4 hour nose bleed that would not stop. I was admitted to the hospital and give 6 units of blood and 2 units of plasma.

The Hematologist and the Gastroenterologist discussed my case, and they said that maybe the Celiac and the blood issues were related, but they really didn't think so. I found an article on line in the Israeli Journal of Medicine about a case that presented itself very similar to mine. I was thrilled to find documentation that it can and does happen! I faxed the article to the Hematologist, and he actually called me to thank me.

Sorry for the rambling on...and on, but I wanted to let you know that you are not the only one. Sometimes doctors don't have all the answers, or it takes them a while to put all the pieces together.

You are doing the right thing with keeping on top of things, and looking for more information to provide to the doctors. Hopefully between the doctor's, the resources on this board, and yourself you will be able to get the help that you need.

[KaitiUSA]

Welcome to the board

Your sympoms sound like ones that can be associated with celiac. Also, the EMA is a pretty specific test so that being high my red flag just went up.

Also, biopsies can only rule celiac in but not out...if you have beginning stages with little or no damage or sporadic damage they can easily miss it.

Was the full panel run on you? All 5 tests(IgA,IgG, total serum IgA, EMA, tTG) need to be run because they all hold a piece to the puzzle.

I would suggest a gene test because about 98% of celiacs have the DQ2 or DQ8 gene. However, some celiacs hold a completely different gene and not all of the genes are identified yet so it would not be 100% sure.

Considering that a good test for celiac came back high and the symptoms you have..what makes you stay on the gluten? Your body would be able to tell you. It definitely sounds like an issue of some sort with gluten.

Have you looked into Enterolab testing? That may be another option. They do tests for malabsorption, tTG, gluten sensitivity and they can also do gene testing that detects not only celiac genes but gluten intolerance genes as well. You can check out more info about it on their website.

[chaddwell]

Hello,

Thank you all for the replies. I appreciate it being that my post was so long.

Kevsmom, it sounds like you've finally found an answer to your problems. Are you feeling better? I assume you are now gluten free? How long did it take before you noticed changes? I'm sure people don't realize that something like a nose bleed can be dangerous! I'm glad you made it through that. It must have been scary.

My iron is always normal but for some reason I experience episodes of bruising for a couple of months and then it goes away. I noticed it last year and this year, it happened in April and May of last year and this year but at the same time I was itching all over my body, which I think was an allergy from something outside. Haven't figured out what though. And it's at that time that the bruising starts. I'm not sure if the bruising is from the allergy, occuring from an immune response, or if it is a coincidence. I don't think it was a coincidence because it happened to me at the same time of year two years in a row. I did see a hematologist and my tests were normal except the bleeding time was prolonged. Not a lot, not nearly as bad as you.

KaitiUSA, after I had the negative biopsy the doctor did say that it could be early stages or patchy as you said but then about 3 years later I had the panel repeated and this time all tests were negative. My endoscopy did show my stomach had minimal antral erythema/antral gastritis. That doc didn't do total serum IgA but I have had that done when I had the complement testing done last year as well as a few other antibodies and they were within normal limits. The first panel in 1999 had gliadin iga and igg as well as endomysial iga, that's the one that was positive. The second panel in 2002 had gliadin iga and igg but instead of endomysial iga it was replaced with tissue transglutaminase iga, all were negative that time. I didn't go to the same lab. I have since moved out of that area and need to find a new doctor. I do want the tests you mentioned done.

Can a doctor order a gene test or do I have to get that myself through a lab like you mentioned? I go to Quest for my bloodwork but there is a LabCorp around me if that is better. Anyone familiar with LabCorp?

My doctor didn't think I had celiac disease based on my biopsy and the second panel being negative. I didn't go gluten free because I thought it was probably more related to hormone imbalance but that still hasn't panned out to much and I haven't been able to control my symptoms. My doc didn't say to try changing my diet, just to add more fiber because he thought it was IBS. At the time I was having abdominal pain, nausea with a few bouts of vomiting, constipation, fatigue, and diarrhea. I still get nausea and occasional diarrhea and pain. Fatty/greasy foods upset my stomach and makes me more gassy!! Dairy does too. Anyway, I didn't think much about changing my diet until recently. Although, I've always wondered about celiac and maybe it is a possibility because I did have a positive test. But on the other hand my biopsy was negative and my second round of tests a few years later were also negative. Could I still have it? I refuse to believe that I have this stuff happening for no good reason.

My stomach bloats up within minutes after eating anything, it doesn't matter what it is, but my belly is bloated before I'm done eating. When I eat apples I get pains in my stomach right away. Does that happen to anyone else?

Has anyone with celiac experienced thinning hair/loss? My hair has thinned and it's yucky. I've also gotten some gray hairs, just a few stray strands. I noticed that maybe 4 years ago. I don't remember exactly. Has the hair come back since going gluten free?? I want my old hair back And my face breaks out horribly. I noticed it happens during ovulation though.

Can celiac cause mitral valve prolapse? I haven't read about a connection but maybe someone here knows.

I've taken supplements since June and haven't noticed any improvement on them. I haven't taken them for a few weeks and I still feel the same.

Thank you for your time everyone.

Channon

[Guest Viola]

Channon, if you do have Celiac, or even not absorbing vitamins and minerals for what ever reason, it's not likely that you would be able to absorb the suppliments either. Kaiti is right, the biopsy could be patchy and they missed it. Good luck in your further testing. I hope you get an answer what ever it may be.

[Rachel--24]

Channon,

Enterolab does gene testing. You don't need a doctor...you can order the test from their website. The gene testing by itself is around $150. I think there are other labs who do gene testing but I'm only familiar with Enterolab.

[chaddwell]

Thanks for the reply. I have checked out some of the labs online and the tests are expensive. If I had the money to spend I would like to buy a bunch of tests.

Is there a section on here that lists websites that sells gluten-free make-up, shampoo, skincare, ect?? I already checked out the glutenfreemall.

Thanks again

Channon

Rachel, have you noticed an improvement in the way you feel since going gluten-free? What symptoms were you having?

Did you report your results from Enterolab to your doctor? I'm curious to know how doctors feel about us getting testing on our own through these labs.

[Rachel--24]

Rachel, have you noticed an improvement in the way you feel since going gluten-free? What symptoms were you having?

Did you report your results from Enterolab to your doctor? I'm curious to know how doctors feel about us getting testing on our own through these labs.

I did have dramatic improvement when I first changed my diet...well actually *first* I went through some terrible withdrawl or something. I felt worse for about a week but then started improving. Before the diet I was not functioning at all and I actually thought I was dying. I had lost alot of weight and had been off work (disabilty) for 2 years. The doctors couldnt figure anything out. A month after I started the diet I went back to work and its been 10 weeks now with no sick days and I work my complete shifts. Its still hard to believe because I couldnt even get out of bed before. I'm either much more sensitive to gluten accidents now or I have something else going on because I still have some bad days but I have to remind myself its nothing like the last 3 years.

I did give my doctors my Enterolab results and they agreed that I should remain off gluten permanantly. By then I'd already been on the diet and the improvement was undeniable. The doctors that I shared my results with (2 GP's and the GI) did not question the results. Not sure if it was because they were just fed up with me by that time (I was in there constantly for 3 years) or if they genuinely believed the diagnosis. They did apologize to me for not finding the problem and they sent me to a nutritionalist and the GI for a biopsy. Unfortunately the biopsy was 6 months too late so it didnt tell us anything. I'm leaving my HMO...I switched plans and in January I'm going to Stanford where they have a Celiac clinic. Hopefully I'll have better luck with new doctors and I can put all that happened the past few years behind me.

Oh as far as symptoms...I had alot going on. Fatigue, depression, weight loss, fluid retention, brainfog, swelling, blurred vision, memory loss, bruises all over, muscle/joint pains, weakness, hairloss, lots of sensitivities, skin problems, night sweats, gas, bloating and loose stools with undigested food. My GI symptoms werent my main issues.

[Claire]

Just a reminder that the Celiac gene test can only eliminate Celiac as a possibility. No Celiac genes - no possibility of Celiac. If you have the gene (s) then it is possible for you to have Celiac. If you have the symptomology also - then you can be quite sure that you do. . The gene test proves a negative and suggests the possibility of a postive. Claire

[Rachel--24]

Just a reminder that the Celiac gene test can only eliminate Celiac as a possibility. No Celiac genes - no possibility of Celiac. If you have the gene (s) then it is possible for you to have Celiac. If you have the symptomology also - then you can be quite sure that you do. . The gene test proves a negative and suggests the possibility of a postive. Claire

Claire, what about the small percentage of people who have Celiac without either of the main Celiac genes? My GI said the gene test cant rule out Celiac 100% of the time.

[Guest Viola]

Rachel ... love the Santa hat Nice and festive.

I don't think we can get the gene testing here in Canada yet. At least I haven't heard of it. I wonder if being on the diet for years would change the out come of that test.

[Rachel--24]

Rachel ... love the Santa hat Nice and festive.

I don't think we can get the gene testing here in Canada yet. At least I haven't heard of it. I wonder if being on the diet for years would change the out come of that test.

Shirley, I like your new pic too.

I'm on my Mom's computer right now and it still shows my old pic. I wonder why that is?

I love Christmas time. I get to listen to Xmas music all day at work...in the past years it used to bug me but this year I'm lovin' it. Getting sick can change some things for the better.

The gene test would never change...no matter how long you're on the diet you'll still have the same genes.

[Guest Viola]

Yes, that makes sense, the genes should never change.

My photo is a bit of computer magic. I cut my dog Sheba's picture out of a picture I took of her in obedience practice doing a "down stay" Then I took a picture of my coffee table centre piece and I put Sheba's picture inbetween the teddy bears It was fun.

[chaddwell]

Rachel,

I noticed we shared some symptoms including hair loss. Did you notice it coming back in since going gluten-free? I guess I'm looking for hope that maybe my hair will thicken up a bit and my hairline will fill out! My hair has been thinning for about 8 years. At least that is when I noticed it.

If anyone else has input about the hair issue I'd appreciate it!

Thanks

Channon

[jerseyangel]

My hair has thinned terribly--I think I have 1/2 the amount of hair that I did when I was 20. I've been gluten-free for 6 months now, and I do notice that I am not losing hair any more. Thats fine with me, I'm really not expecting to grow new hair (I'm 49) but if I stop losing, I'll be happy. I also notice that the hair I do have is healthier looking--not as dry and dull.

[chaddwell]

Thanks for the reply Jerseyangel! I am 29 so maybe I'll get lucky and grow hair back. It would be nice to feel good about myself again. It's amazing how your whole body chemistry can change from celiac. I am not sure if that is my problem or not but it's the direction I'm going in now.

I don't know how fast or soon changes can be seen with hair growing back in. Maybe you will see some growth eventually. Besides your hair not falling out anymore, are you feeling well being gluten-free?

[Rachel--24]

Yes, that makes sense, the genes should never change.

My photo is a bit of computer magic. I cut my dog Sheba's picture out of a picture I took of her in obedience practice doing a "down stay" Then I took a picture of my coffee table centre piece and I put Sheba's picture inbetween the teddy bears It was fun.

Wow...that is so cool! Now that I look at it closely I can tell the dog is real!

I wish I knew how to do all that stuff...I have alot of photo software but I've only learned a few things so far.

Rachel,

I noticed we shared some symptoms including hair loss. Did you notice it coming back in since going gluten-free? I guess I'm looking for hope that maybe my hair will thicken up a bit and my hairline will fill out! My hair has been thinning for about 8 years. At least that is when I noticed it.

If anyone else has input about the hair issue I'd appreciate it!

Thanks

Channon

I dont know how much of my hairloss was due to gluten and how much was caused by thyroid. I had Graves disease at the same time. My hair grows back. I lost alot when I first got sick and it got very dry and brittle but it did grow back when I changed my diet. At that time I started absorbing more of my thyroid meds...I guess because my intestines were healing. My regular dose became too much and I lost alot of hair again...now its filling back in. At least its not dry anymore. Another wierd thing that happens with my hair is that when I'm very sick I'll start seeing grey hairs and the color of my hair sorta looks duller. Then as things get better the grey hairs turn brown again. I could actually see on the strands how they were brown, then grey, then back to brown. I wonder if anyone else has ever had that happen?

[chaddwell]

I also have a few gray hairs! I noticed several years ago that my hair color seemed to get more red in it or something. I had several people ask if I dyed my hair. But I never have...

My thyroid has been checked countless times and each time is normal. How is Grave's diagnosed? Is that through the standard thyroid testing like TSH, T3, T4, etc? Or something different?

[Rachel--24]

My thyroid has been checked countless times and each time is normal. How is Grave's diagnosed? Is that through the standard thyroid testing like TSH, T3, T4, etc? Or something different?

Yes, those thyroid tests determined that my thyroid was overactive. There were other tests that indicated it was Graves (autoimmune). I dont remember all the tests but I did have an iodine uptake test and some kind of scan where they took pictures of my thyroid.

[Felidae]

I also have thinning hair. I think it has stopped thinning since I stopped eating gluten. The funny thing is, I was really going gray right before I went off gluten. The gray hairs seem to have stopped coming even though I keep looking for them.

[kevsmom]

I have posted information about hair loss somewhere else, but I don't know where.

When I was getting out of the shower, the front of me would be covered in hair. This started happening before I was diagnosed with Celiac. I asked my doctor about it, and he suggested that I take Zinc and Selenium. They are found in the vitamin aisle. I guess that these were two of the nutrients that my body was not retaining. If you try this, check with your doctor first, and don't forget to make sure that they are gluten free.

Cindy

[chaddwell]

Thanks for the info Cindy. I have read about zinc in the past and thought maybe that was an issue for me but have never been checked.

I always get the brush off when I mention vitamin/mineral deficiecies. I get the look like, no, that's not your problem, I don't know what it is but that's not it!!

I know docs aren't perfect but it bugs me that if I'm not text book then it can't be my problem.

I'm going to try and search for hair loss and see what comes up. Thanks.

On a different note, last night when I went to bed I had this feeling in my throat like it was closing or the sides were touching and I couldn't breath. Is that anxiety related?

Channon