On Going Problems Celiac Related?

[SivaK]

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.

[eatmeat4good]

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]

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]

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]

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]

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]

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.

[Roda]

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]

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?...