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

On Going Problems Celiac Related?
0

9 posts in this topic

Hi there, this is my first post ever, on any forum. I just don't know what to do anymore. I was diagnosed with celiac disease about 2 years ago. Blood test showed positive twice then a positive endoscopy. I have been able to keep my symptoms (fatigue, anemia, hair loss, anxiety) under control with a strict gluten free diet, until a few months ago. My symptoms started coming back, at first I thought I was accidentally ingesting wheat, but I can't seem to pin point what I was eating. Finally after a few weeks and some serious crashes (including bad cheats pains and being dizzy to the point of blacking out every time i stand as well as often when i am just sitting), I went to my doctor. He ran blood work, and said my celiac seems to be under control, he said when i was diagnosed my number was at 156, and now is at 11. Unfortunately, my blood cell counts were down, low red and white as well as two other blood related counts. He said my iron is fine, as well as all my other vitamins and nutrients. He does not think my symptoms are related to my celiac. I am now permanently off work, and waiting for more tests to be referred to a hematologist. The problem is when I am not doing any physical activity, my symptoms subside(I even had a second blood test when I was feeling better and my numbers were back to normal), but as soon as I go back to activity (walking, doing the dishes, act..) The symptoms come back(and the blood cell count goes back down). I realized today that I have been eating oats I got from a gluten free store recently. They say wheat free on the bag, but are they gluten free? I also work with hair dye that all contains wheat on a regular basis (when i wash it out it is on my bare hands about 4 times a day 5 days a week). I just want to get back to my regular life, and currently this is not an option. I still think this has something to do with my celiac, as the symptoms are very similar to the ones I was having before I was diagnosed, but my doctor thinks it has to do with my blood or an unrelated auto immune deficiency, and not the celiac. Has anyone had a similar experience? Can celiac result in a low blood cell count? Should I seek a second opinion from another doctor? Please help. Thank you.

0

Share this post


Link to post
Share on other sites


Ads by Google:

Some Celiacs react to the gluten in oats.

If the oats were made in a dedicated gluten free facility then this might be the case for you.

If they were not made in a dedicated gluten free facility then they likely contain gluten, as virtually all oats are contaminated with wheat unless they say they were made in a gluten free facility.

I would only eat certified gluten free oats to do the experiment to see if you still feel sick.

Can you wear gloves when you are working with wheat containing ingredients at work?

Unless you are able to clean all of the dye off your hands and from under your nails, your food could be getting contaminated from the gluten residual on your hands.

Just a couple of thoughts for you before the hematologist weighs in.

Good luck.

0

Share this post


Link to post
Share on other sites

Thanks for your thoughts, i really appreciate it, i never thought about the dye under my fingernails. I am going to cut out the oats and since I'm not currently working, no dye either, and see if i start feeling better. thanks again.

0

Share this post


Link to post
Share on other sites

I would use gloves for dyeing. My stylist does and she doesn't have any problems with the ingredients.

Your " numbers" for Celiac are normal? Then this may have nothing to do with Celiac. Your red and white cell counts go low with activity? My thoughts are that this is not Celiac related and you might need to see a " blood" doctor ( hematologist).

I know people with some odd blood disorders that are quite manageable.

0

Share this post


Link to post
Share on other sites

I would use gloves for dyeing. My stylist does and she doesn't have any problems with the ingredients.

Your " numbers" for Celiac are normal? Then this may have nothing to do with Celiac. Your red and white cell counts go low with activity? My thoughts are that this is not Celiac related and you might need to see a " blood" doctor ( hematologist).

I know people with some odd blood disorders that are quiet manageable.

I guess I was just hoping there was an easy answer to this, like diet adjustment, but thank you for your honest opinion. Its good to hear that lots of blood disorders are manageable, because google gets scary.

0

Share this post


Link to post
Share on other sites




I guess I was just hoping there was an easy answer to this, like diet adjustment, but thank you for your honest opinion. Its good to hear that lots of blood disorders are manageable, because google gets scary.

It is good that you are following up with the hemetologist and hopefully he will have some answers.

You could of course also have other intolerances. Soy and dairy being a couple of the most common. Have you tried doing a food and symptom log? Or going with just whole foods like meats, fruits and veggies, for a while to see if it helps. You also need to make sure you are taking all the precautions needed at home.

If you can remember what may have changed when the symptoms started that may also give you a clue as to what is going on. New med, new job working around gluten, new hobby, home remodeling etc...

I'm sorry you are feeling so badly and hope things get figured out and you recover soon.

0

Share this post


Link to post
Share on other sites

It is good that you are following up with the hemetologist and hopefully he will have some answers.

You could of course also have other intolerances. Soy and dairy being a couple of the most common. Have you tried doing a food and symptom log? Or going with just whole foods like meats, fruits and veggies, for a while to see if it helps. You also need to make sure you are taking all the precautions needed at home.

If you can remember what may have changed when the symptoms started that may also give you a clue as to what is going on. New med, new job working around gluten, new hobby, home remodeling etc...

I'm sorry you are feeling so badly and hope things get figured out and you recover soon.

Yeah I was actually thinking about getting one of those food allergy tests done to see if I do have anything else but I've been researching them, and it seems they may be somewhat inaccurate. Have you heard anything about these testa? I might just get one done anyway, some people seem to find success with it. Going on a food elimination diet may be best. It looks like soy, lentils, dairy, and eggs are pretty high on the list. I am 27 and have never consumed meat in my life (parents are vegetarians, raised that way), I would like to avoid it at all costs, any thoughts on other forms of protein? I also can't seem to find any research pointing towards the drop in blood cells being related to food allergy. Everything seems to be related to gastronomical issues, but even with my celiac that has never been a major problem for me, who knows? I'm willing to try just about anything.

0

Share this post


Link to post
Share on other sites

If gluten free oats turn out to be a problem for you then be aware some gluten free products can have cross contamination from them also. I am EXTREMELY sensitive to gluten free oats and even slight cross contamination from them. The CC kept me sick for 8 months before I figured it out. I already knew I couldn't eat the oats but didn't think about CC from them. If I carefully source gluten free products that don't use any gluten free oats then I'm fine.

0

Share this post


Link to post
Share on other sites

I don't know if anyone is still paying attention to this thread, just thought I'd let ya'll know that since going off the oats, and not being at work therefore not being in contact with the wheat containing hair dye, as well as being extra careful with my diet (no eating out) I am finally starting to feel better. I did a lot of research on what was going on, and it turns out celiac disease can cause a temporarily low blood cell count, and if you're not consuming large amounts on a regular basis, you blood will test negative for celiac disease (I'm sure everyone knows that). Why am I not a doctor?...and Why does gluten want to ruin my life?... :(

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
      103,891
    • Total Posts
      919,518
  • Topics

  • Posts

    • I'm actually scared to go to the doctor and could use some advice
      I finally found out my gluten issues right after I left a very stressful job and could no longer function I was so ill. Symptoms had gone on for decades before, but it took a moment of stress to bring it to a head. I had anxiety gerd and the irregular heartbeat and I had a nasty bout of shingles when I was 20 which I've subsequently realised was due to my compromised immune system.  Shingles follows a particular nerve  around the body which is probably why Cristiana's dr suspected it. I had it from the front right of torso moving around to my back. The pain you describe is similar to how shingles felt before the blisters arrived, it starts with the skin feeling very tender as if it's been burnt. Maybe you're getting the forerunner to it and your body is successfully stopping it progressing? Ah, enough amateur doctoring from me! I hope you get the answers you need and are soon on the way to recovery. Sending you best wishes.
    • Amaranth and Quinoa: Pseudo-cereal Super Foods
      My latest obsession is creating new quinoa recipes, since my eight year old daughter absolutely loves it! Her favorite is warm quinoa with crumbled turkey sausage, broccoli, and lots of cumin. She also loves it with oil and balsamic vinegar. I like it cold with chopped veggies, garlic, and fresh squeezed lemon juice. View the full article
    • Easy Soy-Mirin Glazed Salmon (Gluten-Free)
      If you're looking for and easy yet exotic way to serve fish, look no further than this soy and mirin glazed salmon. It's easy to make and offers a delicious departure from standard fare. View the full article
    • Mexican?
      Chipotle is one of my favorite places to eat, but it is a 50/50 chance of having a reaction due to cross-contamination.  Yes, they graciously make an effort to be gluten-free and will change gloves.  BUT, before that they used gloves and handled flour tortillas and then used same gloves to reach into the lettuce and cheese--voila--cross-contaminated food.  Changing gloves for you does not avoid this cross-contamination problem.  I started having reactions and my daughter advised me to avoid all the corn products there because of what she read on their website about allergens--so no more chips, or crispy taco shells, or corn.  I also avoid the green salsa and the pico de gallo--not that I am aware of cross contamination but she never eats that there and she has been successful at not having reactions, so that is what I do now and have had much success. Here is what I get:   burrito bowl with either white or brown cilantro lime rice, grilled veggies, black beans, barbacoa, red salsa, cheese, sour cream, guacamole, and lettuce on top.  So GOOD! and so far, safe for me.
    • I'm actually scared to go to the doctor and could use some advice
      Hi Elle.   To be honest, to this day I am not sure if I actually had zoster sine herpete.  It was one of several suggestions by bewildered doctors.  What I can tell you is that I had to have MRIs  because one doctor thought I might have trapped nerve in my spine and I thought it would reveal something dreadful being the sort of person who gets weird nerve sensations - and it didn't reveal a thing.   It was unsettling to have symptoms like that for so long but what made me think my brother in law might have been right was because the worst of the symptoms lasted a year which I gather is pretty typical (but don't panic, because they can go a lot faster!)   My nutritionalist told me that if we get run down we are more prone to shingles so that is something to watch. Easy to say (and I'm speaking to myself here!) try not to spend too much time by yourself worrying about these things because anxiety never helps with nerve pain. I found that rest was very beneficial so I would recommend you try to get as much of that as you can.  Also, someone suggested a warm bath for 20 minutes with some Epsom salts.  That helped too. As I say, just one reason you might be getting this pain but I would continue with the investigations and perhaps mention the pain to your doctor and ask if it could be shingles.      
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • Jmg  »  admin

      Hello Admin!
      I don't know whether this is of interest to post on your articles feed:
      http://pratt.duke.edu/about/news/window-guts-brain
      Kind Regards,
      Matt
      · 2 replies
    • celiac sharon  »  cyclinglady

      Hello cycling lady, have you noticed my picture is showing up as you?  Have no idea why but it's rather disconcerting to see my picture and your words 😉  Do you know how to fix it?  You seem to have far more experience with this board than I do
      · 1 reply
    • Larry Gessner  »  cyclinglady

      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it.
      https://youtu.be/IU6jVEwpjnE Thank You,
      Larry
      · 2 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,937
    • Most Online
      1,763

    Newest Member
    ckrlink1
    Joined