Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

On Going Problems Celiac Related?

SivaK

Recommended Posts

SivaK Newbie
SivaK
Posted

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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


eatmeat4good Enthusiast
eatmeat4good
Posted

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.

SivaK Newbie
SivaK
Posted
  • Author

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.

kareng Grand Master
kareng
Posted

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.

SivaK Newbie
SivaK
Posted
  • Author

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.

ravenwoodglass Mentor
ravenwoodglass
Posted

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.

SivaK Newbie
SivaK
Posted
  • Author

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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Roda Rising Star
Roda
Posted

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.

SivaK Newbie
SivaK
Posted
  • Author

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?... :(

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Mari
      - Mari replied to Jmartes71's topic in Related Issues & Disorders
      21

      My only proof

      I think, after reading this, that you areso traumatized by not being able yo understand what your medical advisors have been what medical conditions are that you would like to find a group of people who also feel traumatized who would agree with you and also support you. You are on a crusade much as the way the US Cabinet official, the Health Director of...
    2. Jmartes71
      - Jmartes71 replied to Jmartes71's topic in Related Issues & Disorders
      21

      My only proof

      Thus has got to STOP , medical bit believing us! I literally went through 31 years thinking it was just a food allergy as its downplayed by medical if THEY weren't the ones who diagnosed us! Im positive for HLA-DQ2 which is first celiac patient per Iran and Turkey. Here in the States especially in Cali its why do you feel that way? Why do you think your celiac...
    3. knitty kitty
      - knitty kitty replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      44

      Supplements for those Diagnosed with Celiac Disease

      @Scatterbrain, Thiamine Vitamin B1 and amino acid Taurine work together. Our bodies can make Taurine from meats consumed. Our bodies cannot make Thiamine and must consume thiamine from food. Meat is the best source of B vitamins like Thiamine. Vegetarians may not make sufficient taurine since they don't eat meat sources of taurine...
    4. knitty kitty
      - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      21

      My only proof

      @Jmartes71, I went to Doterra's site and had a look around. The Doterra TerraZyme supplement really jumped out at me. Since we, as Celiacs, often have digestive problems, I looked at the ingredients. The majority of the enzymes in this supplement are made using black mold, Aspergillus! Other enzymes are made by yeast Saccharomyces! Considering...
    5. Scott Adams
      - Scott Adams commented on Scott Adams's article in Additional Concerns
      2

      Gluten Transfer from Biodegradable Tableware: What a New Study Found and Why It Matters (+Video)

      Thanks for mentioning this, and here is an older article on the topic:
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,543
    • Most Online (within 30 mins)
      7,748
    Jeanette K.
    Newest Member
    Jeanette K.
    Joined
  • Celiac.com Sponsor (A20):

  • Celiac.com Sponsor (A22):



  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • Mari
      My only proof

      By Mari · Posted

      I think, after reading this, that you areso traumatized by not being able yo understand what your medical advisors have been  what medical conditions are that you would like to find a group of people who also feel traumatized who would agree with you and also support you. You are on a crusade much as the way the US Cabinet  official, the Health Director of our nation is in trying to change what he considers outdated and incorrect health advisories. He does not have the education, background or experience to be in the position he occupies and is not making beneficial decisions. That man suffered a terrible trauma early in his life when his father was assonated. We see now how he developed and worked himself into a powerful position.  Unless you are willing to take some advice or  are willing to use a few of the known methods of starting on a path to better health then not many of us on this Celiac Forum will be able to join you in a continuing series of complaints about medical advisors.    I am almost 90 years old. I am strictly gluten free. I use 2 herbs to help me stay as clear minded as possible. You are not wrong in complaining about medical practitioners. You might be more effective with a clearer mind, less anger and a more comfortable life if you would just try some of the suggestions offered by our fellow celiac volunteers.  
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      Thus has got to STOP , medical bit believing us! I literally went through 31 years thinking it was just a food allergy as its downplayed by medical if THEY weren't the ones who diagnosed us! Im positive for HLA-DQ2 which is first celiac patient per Iran and Turkey. Here in the States especially in Cali its why do you feel that way? Why do you think your celiac? Your not eating gluten so its something else.Medical caused me depression. I thought I was safe with my former pcp for 25 years considering i thought everything I went through and going through will be available when I get fired again for health. Health not write-ups my health always come back when you're better.Im not and being tossed away at no fault to my own other than shitty genes.I was denied disability because person said he didn't know how to classify me! I said Im celiac, i have ibs, hernia, sciatica, high blood pressure, in constant pain have skin and eye issues and menopause intensified everything. With that my celiac nightmare began to reprove my disregarded disease to a bunch of clowns who think they are my careteam when they said I didn't have...I feel Im still breathing so I can fight this so no body else has to deal with this nightmare. Starting over with " new care team" and waisting more time on why I think I am when diagnosed in 1994 before food eliminated from my diet. P.s everything i went through I did write to medical board, so pretty sure I will continue to have a hard time.
    • knitty kitty
      Supplements for those Diagnosed with Celiac Disease

      By knitty kitty · Posted

      @Scatterbrain, Thiamine Vitamin B1 and amino acid Taurine work together.  Our bodies can make Taurine from meats consumed.  Our bodies cannot make Thiamine and must consume thiamine from food.  Meat is the best source of B vitamins like Thiamine.   Vegetarians may not make sufficient taurine since they don't eat meat sources of taurine.  Seaweed is the best vegetarian source of taurine. Vegetarians may not consume sufficient Thiamine since few veggies are good sources.  Whole grains, legumes, and nuts and seeds contain thiamine.  Many of these sources can be hard to digest and absorb for people with Celiac disease.   You may find taking the forms of thiamine called Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) and a B Complex will give the benefits you're looking for better than taurine alone.  
    • knitty kitty
      My only proof

      By knitty kitty · Posted

      @Jmartes71, I went to Doterra's site and had a look around.  The Doterra TerraZyme supplement really jumped out at me.  Since we, as Celiacs, often have digestive problems, I looked at the ingredients.  The majority of the enzymes in this supplement are made using black mold, Aspergillus!  Other enzymes are made by yeast Saccharomyces!  Considering the fact that Celiac often have permeable intestines (leaky gut syndrome), I would be very hesitant to take a product like this.  Although there may not be live black mold or yeast in the product, the enzymes may still cause an immune system response which would definitely cause inflammation throughout the body.   Skin, eyes, and intestines are all made from the same basic type of cells.  Your skin on the outside and eyes can reflect how irritated the intestines are on the inside.  Our skin, eyes, and intestines all need the same vitamins and nutrients to be healthy:  Vitamin A, Niacin B3 and Tryptophan, Riboflavin B2, Biotin B7, Vitamin C, and Omega Threes.  Remember that the eight B vitamins work together.  Just taking high doses of just one, vitamin like B12, can cause a deficiency in the others.  Taking high doses of B12 can mask a Folate B9 deficiency.  If you take B12, please take a B Complex, too.  Thiamine B1 can be taken in high doses safely without toxicity.  Thiamine is needed by itself to produce energy so every cell in the body can function, but Thiamine also works with the other B vitamins to make life sustaining enzymes and digestive enzymes.  Deficiencies in either Niacin, Vitamin C, or Thiamine can cause digestive problems resulting in Pellagra, Scurvy, and Gastrointestinal Beriberi.   If you change your diet, you will change your intestinal microbiome.  Following the Autoimmune Protocol Diet, a Paleo diet, will starve out SIBO bacteria.  Thiamine keeps bacteria in check so they don't get out of control as in SIBO.  Thiamine also keeps MOLDS and Yeasts from overgrowth.   Menopause symptoms and menstrual irregularities are symptomatic of low Vitamin D.   Doctors are not as knowledgeable about malnutrition as we need them to be.  A nutritionist or dietician would be more helpful.   Take control of your diet and nutrition.  Quit looking for a pill that's going to make you feel better overnight.  The Celiac journey is a marathon, not a sprint.   "Let food be your medicine, and let medicine be your food."
    • RUKen
      Are Lindt chocolate balls gluten free?

      By RUKen · Posted

      The Lindt (Lindor) dairy-free oat milk truffles are definitely gluten-free, and (last time I checked) so are the white chocolate truffles and the mint chocolate truffles. 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.