• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Oh Ugg....
0

4 posts in this topic

Recommended Posts

Nantzie    1

I have been off most of the supplements I had been taking. I figured out I might be celiac about a week ago and my first doctor appt is Oct 4th. I had been able to stay ahead of most of my symptoms with the supplements, but if I ever went off them, they'd start up again after just a couple days. Which is why I was always researching to try and figure out what was causing it, because I know just chasing symptoms isn't solving anything.

Anyway, I've been off most of it for a week, which is the longest time in the last like 7-8 years. And I am so miserable. I'm having a hard time thinking. I've got a low-level headache. I'm kind of just achy all over. My appetite is almost non-existant. Even the thought of food is just gross. I eat a couple times a day just because I know I have to. Try to get in some protein for energy, plus keeping up the gluten for the tests I need to have. And today was the worst. I'm starting to notice my hair coming out. Not a whole bunch, but way more than normal.

My hair coming out was one of the symptoms I had when I had a quick 25 pound weight loss 7 or 8 years ago. At the time I had a huge amount of stress (ended up escaping an abusive relationship and was working 16 hour days) and so the weight loss and the hair loss totally made sense as a stress reaction. So I never even thought about it being anything I needed to see the doctor for. I ended up just going the alternative medicine route and had a lot of symptom-treating success.

But anyway, I'm kind of freaked out. Even though I realized a week ago that this was probably what I had, the appetite going away along with the hair loss is just making it more real. And the fact that it happened so quickly is scary.

:blink::o:(

Nancy

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


Guest DanceswithWolves   
Guest DanceswithWolves

You may have malabsorbtion issues.

You're body is not getting the nutirents and proteins it needs. I've been having the same problem. Hair falls out, or grows outward in crooked,wild strands. Also, my nails were real brittle and had white flakes.

I went to my Gastro doctor for the first time. He pulled up my test results on my blood work and told me that I don't have celiac disease, I have IBS. Whatever. I told him back that from what I've read and heard I have to be eating gluten foods for at least 3 months before a test. He then tells me to go ahead and eat whatever I want to get my weight back up and not to worry so much about what I'm eating.

He asked me quite a few phycological questions too, so I guess that's where this is all heading next. Great.

I can understand that your body does need some fat on it to defend itself. I've been having really bad chills in my hands and feet at times.

Share this post


Link to post
Share on other sites
Rachel--24    4

If you did have Celiac and malabsorption the supplements could've been helping you with some of the symptoms. Why did you stop taking them...is it for testing purposes? I'm not taking any supplements right now except for enzymes....if I get alot of gluten in me my hair really starts to fall out and my skin gets dry....along with alot of other bad stuff. :(

Share this post


Link to post
Share on other sites
Nantzie    1

Yea, I've got cold hands and feet too. And I'm always either too hot or too cold.

I was a medical transcriptionist for a few years (that was what I was doing working 16 hour days) and there was one doctor in one of the groups who, every time a patient came in with a written list of symptoms or problems, rather than just telling the doctor, he recommended that they be evaluated by a psychologist for Obsessive Compulsive Disorder. <_< He was really trying to be helpful and meant well, but not everyone who comes in with a post-it note is OCD ya know?

That's one of the bad things about working as office staff in a medical office, AND now I'm seeing it's also one of the bad things about having a disease that isn't well-understood yet. You realize that doctors don't know everything and they're just people trying to do the best they know how to do. That realization is kind of like when you find out that Santa isn't real, or that you're parents don't have all the answers. It just kind of bursts your bubble.

I've typed up my entire medical history for my doctor's appt in Oct. It's like 5 pages. If she's anything like that doctor I worked with, she'll lock me up and throw away the key. But if I don't, I'll totally go "brain fog" and not remember to tell her about something. Even when I was typing it up, it wasn't until I had it almost finished that I realized that I had completely forgotten to mention that I had to have an appendectomy. You'd think a person would remember that about their own life... Plus, they never give you enough time or enough room on those forms they have you fill out.

Yep, I did stop taking the supplements for testing purposes. I knew that I was supressing a lot of the symptoms by taking the supplements, and I wanted to give her an accurate picture of my health without them. And if it ends up I don't have celiac specifically, but have some other kind of problem causing malabsorption, I want to make sure I'm not messing up any other test results that might show something. Right now, all I'm taking is digestive enzymes and St. John's Wort (for depression). I was thinking about even stopping the digestive enzymes a week or two before the appointment. But I'm not sure I'm brave enough to go into the doctor's office with all of those other people and have gas problems. I think I'd die of embarassment.... :o

I'm just so glad I found this board. It's nice to be able to talk about all the awful stuff with people who understand.

:)

Nancy

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

0

  • Forum Statistics

    • Total Topics
      107,912
    • Total Posts
      938,649
  • Member Statistics

    • Total Members
      65,837
    • Most Online
      3,093

    Newest Member
    Heba al-wawi
    Joined
  • Popular Now

  • Topics

  • Posts

    • Vitamin deficiencies of vitamins D, C, and B12 and Calcium deficiency can all cause night sweats.  (Perhaps the methyl form of B12 is needed for those with that MthFr gene.)  Also, consistently high blood sugar levels can cause night sweats.  As a  type two diabetic, I find if my blood sugar levels are too high or not below 120  two hours after eating, i am prone to night sweats.  Hypoglycemia (low blood sugar) can also cause them, usually accompanied by the shakes and teeth chattering for me.    Cycling Lady is right about night sweats being caused by other illnesses, too, like heart valve problems or tuberculosis, so be sure to check with your doctor.   Hope this helps. P.S. Saw your picture.  You're looking good!  So happy for you!
    • It's unfair to make such a general statement about ER's and hospitals.  Unfortunately, I've been to the ER several times and hospitalized three times in the past few years.  The staff took me seriously when I told them I had celiac.  Popsicles and drinks were checked for gluten, and a good laugh took place when a nurse came in to remove the cheesecake that was brought to me when the staff found out it was our anniversary. Dietary services were called and Lucy's gluten free cookies were given to me instead. Once admitted to the hospital, a dietician was sent to my room to discuss meals and she checked back with me a couple of times.  The only mistake made was the dairy free protein shakes that were delivered daily and left untouched.  When dietary called my room to ask why I wasn't drinking them, my husband had to inform them to read the label as it was clearly labeled containing milk products.  
    • Here is more information about testing family members. https://celiac.org/celiac-disease/understanding-celiac-disease-2/diagnosing-celiac-disease/screening/  
    • Hello, I have been dealing with a mysterious rash for the past ten years that I am slowly beginning to think is DH.  It comes and goes, is itchy as all get out and shows up in all the areas that DH appears (elbows, back, torso, knees and base of neck).  It comes and goes over the years which has thrown me a little, but from what I can tell it can happen with DH? Anyways I went to an allergist, he was a jerk and told me it was not an allergy and to get a biopsy (which was done ten years ago when it first happened, but okay).  Me being at my wits end I called up a local dermatologist and got an appt for a biopsy.  I went in armed and ready with the info I have read here about the correct biopsy etc.  Well of course the dermatologist wouldn't give me the time of day Would not listen to the past history of the rash or look at photos, was in and out within five minutes and insisted on a scratch biopsy instead of a punch biopsy.  She simply said she would be highly surprised if it was DH.  I try to respect doctors so I pushed but I did not push hard enough.  She did the scratch biopsy against my recommendations.  So that brings us to today when I received a message that the biopsy showed an allergy and that they could either give me an order of prednisone or refer me to an allergist.  Now if you remember my local allergist sent me away and said it wasn't an allergy.  I am so done and I refuse to just keep medicating myself, I need to find the root cause.   So I have a physical tomorrow night with my regular doctor and I am tempted to just insist on a punch biopsy next to the rash for a proper biopsy.  Couple questions for you guys though.  If a scratch biopsy came back as an allergy could that possibly lead to gluten allergy (I know it doesn't prove that, but could it mean it could be gluten?).  Should I keep pushing for a punch biopsy? I am planning to go gluten free after this appointment anyways but I keep eating it to try and get a proper diagnosis.  I feel I should get a proper diagnosis, one to keep me on track, one to make sure that is what it is and also I did try gluten free for 30 days before and it didn't seem to help the rash.  But from what I have read that could have been to short of a time.  I feel I need a proper diagnosis to help me stay with it and keep on the right path.   Lastly, the rash definitely went through stages and is at an end stage, still itches like crazy but isn't as bad looking as when it started.  Does it matter when you take the biopsy as long as there is a rash it will potentially show?  I hope all this makes sense.  I am tired of being told I am crazy from doctors.  If they could find the solution I wouldn't be looking myself.  I would be very happy to be proved wrong but so far that has not happened and I just want an answer! So tired of being itchy!! Thank you very much for your help and listening!!!
    • I'm sorry I don't have much advice for you but I can relate in some ways. I've took generic Zoloft for about 10 years. When I was diagnosed celiac I worried about and researched my medications and am confident that they are safe for me. I have spent many years fighting depression and anxiety and have tried different meds but finally accepted I need the Zoloft and Xanax probably for life. I will say that most of our serotonin is in our stomachs and any time I switched meds or had to withdrawal my stomach issues were the worst. So please be careful with switching or stopping ( never cold turkey) any psychiatric medication. Also you could be sensitive to other grains. Gluten free bread does not like me. Also so far I have not found any one in the medical field that takes celiac seriously. I have been laughed at even and most don't have a clue what problems gluten does to us mentally and physically.
  • Upcoming Events