Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Newbie Here - Dr. Thinks It Is Celiac Disease
0

4 posts in this topic

Hello - this is a great website - I have been reading up a bunch in here. My problems go back 10 years - I was having digestion issues - constipation and indigestion and went to the gastro. I was dx'd with IBS-C and put on Nexium and back then Zelnorm and after 6 months of being treated I felt better. I was not told to stay away from certain foods but pretty much anything with bread or pasta in it bothered me and now it's all starting again.

A year ago I was dx'd with hypothyroid and am on .075mg Levothyroxine for that. It came back in my bloodwork and I was losing weight and had hairloss. Still had tummy troubles but attributed it to stress and eating poorly. I started again with tummy troubles over the summer - more weight loss, I'd get bloated and gassy & constipated after eating pizza, breads or pastas which I love.

I was sick all through the hoidays as I was eating so much stuff - stuffing, breads, pastas, pizzas, etc. And the days I felt very ill, I just drank water and did not eat - I had no appetite.

3 weeks ago I said enough is enough and I started a food diary. I wrote down everything I ate. There were days where I wanted to cut out the breads and pastas and I did. I can tell you on those days I felt much better. The constipation was so bad I had a chronic low back ache but the days I didn't eat this stuff I felt good.

Also to help with the constipation I am taking Magnesium Oxide and it helps me go - I can go every day now but still feel like I can't "finish".

So today was my gasto appointment. She was glad I kept a food diary. She took my weight and I lost 2 more pounds since Christmas. I can't afford to lose anymore as I am now at 96 lbs at 5 feet tall. She said I have a ton of air in my belly and could hear it and feel it. They want to do a colonoscopy to rule out polyps and I am approaching 50 years old. But she also said she wants to do the blood test for the Celiac but I would have to eat and get sick again. We aren't doing that until after the colonoscopy on 2/15. I don't want to be sick for that. I did stop at the store and I bought Align and I also bought some gluten free ensure drinks to put on some weight. She agrees that I have many symptoms of Celiac and to stay off the gluten and report back weekly how I feel.

Guess I am going to be doing a ton of reading in here about foods and reading lots of labels at the stores. How do I tell if gluten is in makeup? I don't wear much but love my lipsticks.

I look forward to learning a lot in here.

Kim :)

0

Share this post


Link to post
Share on other sites


Ads by Google:

Welcome Kim!!

Your are correct -- reading as much as you can and asking questions is the best way to ease a very tough transition.

Is it possible to add an endoscopy to the colonoscopy? Sometimes doctors don't think of it and it is easier to get both done at the same time -- one sedation is better than two.

Did you have your blood tests?

tTG - both IgA and IgG

EMA

DGP - both IgA and IgG

Total IgA

If not, don't remove gluten quite yet -- removing gluten stops the immune reaction that is tested for in the celiac antibody panels. Once the blood tests are complete it is wise to remain on gluten until endoscopy is complete. When ALL testing is complete - then remove ALL gluten.

Hang in there -- oh the lipstick -- I'd start with emailing the manufacturer of your favorites -- you can wait on other products as you don't eat much eye make-up ;)

0

Share this post


Link to post
Share on other sites

Welcome Kim! Don't worry too much about being sick for the colonoscopy. They give you a clean out mixture to take the night before that will get everything clean as a whistle by the next day. Lisa is right, the endoscopy is usually used for celiac testing. they take 5 to 8 small biopsy samples for review at a lab. They check them for villi damage. The blood tests should be done also and they can be done anytime before starting the gluten-free diet. No need to wait for the endoscopy for that. You could also ask for a vitamin and mineral levels test. Celiac can cause malabsorption of vitamins and that is another possible indicator of celiac. Plus it's good to know if you are low on certain vitamins so you can work on getting those levels up.

0

Share this post


Link to post
Share on other sites

Lisa gives great advice. The upper endoscopy is how many celiacs are diagnosed, besides the blood tests she listed. I think a minimum of eight biopsies is recommended for accurate testing. For the blood tests, if you are eating gluten at all, even periodically, I would request getting those labs done this week; the longer you are off gluten, the more likely it is that a false negative result will occur in your lab work, and the harder it will be to get an accurate test. If the gluten is hurting you, try to eat it in the evenings so you can sleep (hopefully) through most of the discomfort.

There are a bunch of gluten-free lipsticks and lip glosses out there. I'm a fan of Bert's Bees... I like the smells.

Also, you might want to make sure your thyroid llevels (free T4 and T3, TSH) are good for you. As you know, when you go hypo it slows your metabolism and digestion and causes some serious constipation. I know thyroid treatment seemed to help my "C".

Best wishes to you, and welcome to the board. :)

Oops, editted to add that I posted at the same time as Paul so I repeated a few of his points.

0

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
      104,642
    • Total Posts
      921,568
  • Topics

  • Posts

    • I was only asking because when ferritin is low that you can experience hair loss/fatigue etc. even if your other iron levels are in range. This just happened to me so I thought I would share just in case it helps you. Ferritin should be above 50 to be optimal, not just "in range."  I've been on iron supplements and much better now. This may not be your problem at all, but I would have them check your ferritin levels. Low iron or anemia is common with celiac. The ferritin test is measuring how much iron is stored in your body. FYi: Iron binding capacity is really telling you how much protein your liver is making in order to carry that iron around. Usually, iron binding capacity will be higher in the range when iron is low. Edit: Also my blood pressure was low when my ferritin level got very low.
    • Hello I'm happy to join, any help is greatly appreciated as it can be difficult by times for sure. Unfortunately, I have been told my doctor has definitely not been doing anything correctly and very backwards about Alot of things. I live in canada, and there are celiac support groups I have found but I am about 2 hours away from any. I live in a pretty rural area. Although,  I have still received some help from them , they prefer a diagnosis before helping out to much. My doctor has me on a waiting list to see a gastrointestinal specialist but whenever I called her office to inquire about an appointment time I was told there was a very long wait and that I was considered to be a non emergency. So I am waiting to get an appointment. I have seen a dermatoligist for some of my rashes and she said it was dermatitis and gave me different creams for them.  It is frustrating because I don't know how to go about getting a actual diagnosis besides this biopsy. I was told to request a different specialist, but supposedly there is a waiting period for most in our area. 
    • Thanks for all of the replies. I've just found out I'm not getting to see a dietician because of not having a definite diagnosis which is another blow. I've had loads of bloods done but they just say they're all normal. I did have low vitamin D and high parathyroid but it's sorted itself out after a course of high dose vitamin D and they're not checking it again for a year. No chance of getting referred to endocrinology, gastro won't do it and neither will my gp. I've tried giving up coffee and all fizzy juice and it hasn't made a difference. I'm exhausted and scared and still have no clue what to do next. My gp has zero experience dealing with this type of thing - last time I was there she said it could be because I've restricted my diet too much and I should eat more gluten-free replacement products - everything I've read online says this is the worst thing to do! I'm asking for a copy of the last blood results this week so I can go through them myself but other than that I'm pretty stuck. 
    • I really am iffy on talking about this side of my gluten issues, I think I am about to ruin my reputation on this forum coming about as some extreme crazy guy saying this but I wanted to get this off my chest and perhaps see if anyone else might share a similar trauma. I get emotional recalling it, this side of my reactions, as it is most ingrained and very traumatizing experience, and I am not proud of it as the mentality I have now disgust me but I am going to come out about it. One of the scariest things in this world is when your own mind turns against you, when you can not think about what you want to think about, when you can not do what you know you should be able to do. When I got glutened really bad these where things I felt with my own mind would start looping, and thoughts would not come together. I would loose comprehension, feel like I know I should be able to think about something but my mind was not working. The same thing looped over and over and over like a broken record, This led to anger, anxiety, depression, panic, top it off with loss of feeling in my hands and feet, and the pains in the gut......it was a nightmare. I would go as far as beating my head against walls and punching them out of frustration as to why my own body and mind where not working, I just wanted it to end the pain to stop. I still have scars on my fist from punching into a nail in a stud once and kept going.....I scared everyone and myself distanced my self from loved ones. And started running a bucket list accepting that I was going to die soon. Hell to this day parts of the brain damage seem to be permanent as I can no longer do computer programing or some forms of math, they just no longer make any sense or connect. Then we learned what was causing it, and once the symptoms started to fade, I would get very angry if someone in the shared house did something stupid and got me sick again. The fear of going back to that caused violent and drastic actions to get away from what was making me sick. The sheer fear of my own mind turning on me led me to drastic actions to prevent it, throwing everything away I thought could make me sick, making sure no one else used that kitchen, used freezer paper and gloves when fixing my foods and working in there. I really destroyed and burned all bridges I had then and alienated myself from others. In the end it motivated me to learn how to cook, to get and renovate my own apartment in a building downtown, and start a business to pay for my new diet, by selling safe food to others with this issues locally at farmer markets. But it changed me on a very deep level, that traumatic experience to this day I have a issue looking at others and dealing with other humans who eat that stuff.......the stuff that breaks my mind and body so horrifically. If I have to compare it to something its like watching aliens drinking antifreeze and eating poison.....it causes a subconscious level of disgust and slight envy. I really can not even look at the stuff without recall what it does and feeling a twitch. I know I am the alien here, but it feels vise versa, and I look down on the normal people as odd creatures.  I go to the store and find myself overly avoiding contamination, keeping stuff in my own bags, asking the cashier to scan and bag it as I pass it not letting it touch that flour I see on the belt. I am hyper sensitive to the stuff I know and that fear semi dominates my mind as crazy as it sounds.  I am recovering and am forcing myself to try to mingle with other humans overlooking that one thing, but that deep rooted trauma still flares up as a protective measure especially around foods.  I could talk on and on about the other side effects but this one is the hardest to talk about it, and I feel others might be able to relate to it.    
    • Time.  You need time to heal.  Yeah, I am like a broken record!  😄 So...Lycra is your best friend for now (that and old baggy sweats!).  Hang in there!  Hugs!     
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,648
    • Most Online
      3,093

    Newest Member
    Mileenabug
    Joined