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

I Was Doing So Well! What's Going On?


laula

Recommended Posts

laula Newbie

I've been gluten and dairy free since April 09 and started doing really well. My TTG was negative but I feel so much better not eating gluten or dairy that I just cut it all out on the advice of my naturopath and lost 60 lbs and gained tons of energy!! As of late though, I'm always constipated and no amount of flax, water, veggies, protein, carbs anything help. I haven't changed my diet at all since April, and was recently diagnosed with iron deficiency anemia which I have been taking Floravit for (iron pills mess up your tummy) and seemed to be doing better but have been experiencing a lot of dizziness and super low blood pressure and ended up fainting for the first time ever last Monday and wound up in the hospital for heart tests and stuff which all came back negative along with the following blood tests: magnesium, chlorine, sodium, potassium, mono spot, thyroid. The only abnormals were my hemoglobin which was at 112 down from 121 a month ago, and my white cell count was elevated.

My stools are pale too and have to take a suppository just to get things going after a couple days of not going. My urine is a little darker as well..

Is all this related???? I was getting so well and healthy and felt so good for a while but now I feel like crap and know somethings up but I don't know what. My family dr is a dummy and I need a new one but it's hard to find a new one you like and are comfortable with.

Aren't my guts supposed to have healed and absorbing nutrients and iron by now?? What's up??


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



Celiac.com Sponsor (A8-M):



mushroom Proficient
I've been gluten and dairy free since April 09 and started doing really well. My TTG was negative but I feel so much better not eating gluten or dairy that I just cut it all out on the advice of my naturopath and lost 60 lbs and gained tons of energy!! As of late though, I'm always constipated and no amount of flax, water, veggies, protein, carbs anything help. I haven't changed my diet at all since April, and was recently diagnosed with iron deficiency anemia which I have been taking Floravit for (iron pills mess up your tummy) and seemed to be doing better but have been experiencing a lot of dizziness and super low blood pressure and ended up fainting for the first time ever last Monday and wound up in the hospital for heart tests and stuff which all came back negative along with the following blood tests: magnesium, chlorine, sodium, potassium, mono spot, thyroid. The only abnormals were my hemoglobin which was at 112 down from 121 a month ago, and my white cell count was elevated.

My stools are pale too and have to take a suppository just to get things going after a couple days of not going. My urine is a little darker as well..

Is all this related???? I was getting so well and healthy and felt so good for a while but now I feel like crap and know somethings up but I don't know what. My family dr is a dummy and I need a new one but it's hard to find a new one you like and are comfortable with.

Aren't my guts supposed to have healed and absorbing nutrients and iron by now?? What's up??

Hi Laula, and welcome to the forum.

You have posed a really tough one there, and one I am certainly not qualified to answer.

Iron deficiency is common with celiac/gluten intolerance, but others have said that the iron pills are not the best way to go to treat deficiency in celiacs because it takes a long time for the gut to heal, up to two or three years depending on the severity of the disease. Iron tablets do mess up your digestive system and cause constipation, and in your case it may well be that your are not absorbing the iron through your digestive tract because of damage done to it by gluten. If you are fainting, have dizziness, low blood presssure, and still not making enough red blood cells I think I would ask your doctor if you could have the injections because the tablets are not doing you any good.

Disclaimer: I have no expert medical knowledge, and anything I know about the subject I have read online. You may want to read at this link:

Open Original Shared Link

I would get back to your doc ASAP and ask for the injections. Also, have they checked your B12 and folate levels?? Also Vitamin D; all these are commonly not well absorbed by celiacs and can contribute to unwellness.

Wolicki Enthusiast
I've been gluten and dairy free since April 09 and started doing really well. My TTG was negative but I feel so much better not eating gluten or dairy that I just cut it all out on the advice of my naturopath and lost 60 lbs and gained tons of energy!! As of late though, I'm always constipated and no amount of flax, water, veggies, protein, carbs anything help. I haven't changed my diet at all since April, and was recently diagnosed with iron deficiency anemia which I have been taking Floravit for (iron pills mess up your tummy) and seemed to be doing better but have been experiencing a lot of dizziness and super low blood pressure and ended up fainting for the first time ever last Monday and wound up in the hospital for heart tests and stuff which all came back negative along with the following blood tests: magnesium, chlorine, sodium, potassium, mono spot, thyroid. The only abnormals were my hemoglobin which was at 112 down from 121 a month ago, and my white cell count was elevated.

My stools are pale too and have to take a suppository just to get things going after a couple days of not going. My urine is a little darker as well..

Is all this related???? I was getting so well and healthy and felt so good for a while but now I feel like crap and know somethings up but I don't know what. My family dr is a dummy and I need a new one but it's hard to find a new one you like and are comfortable with.

Aren't my guts supposed to have healed and absorbing nutrients and iron by now?? What's up??

Have you checked to make sure the Floravit does not contain gluten? If that's not the problem, I had similar issues with oral iron. I did two IV does, then didn't need another one for a year, and all my iron levels were good. Probably worth it to discuss iwth your doctor.. My blood pressure went down to about 70 over 50 most of the time, because of the anemia. good luck!

laula Newbie
Have you checked to make sure the Floravit does not contain gluten? If that's not the problem, I had similar issues with oral iron. I did two IV does, then didn't need another one for a year, and all my iron levels were good. Probably worth it to discuss iwth your doctor.. My blood pressure went down to about 70 over 50 most of the time, because of the anemia. good luck!

Floravit is the liquid iron supplement that doesn't contain yeast or gluten, floradix does. Mushroom, I am taking Floravit because of the studies done that it's much more easily absorbed by the body than Slow Fe (the one my dr wanted me to take...no thanks!!!! He doesn't believe in other remedies or naturopathic medicine either).

My B12 levels were checked a couple months ago and according to him, 124 is normal which is actually on the low end of the scale.

Originally what happened was my CBC came back abnormal with a low hemoglobin, hematocrit and other red blood cell abnormalities and he ordered a ferritin , b12, folate and my ferritin came back at 7 (15 is the lowest number in the "normal" range) and said my b12 and folate were fine which he then ordred my TIBC and Iron levels which were abnormal and a serum protein electrophoresis which determined it was iron deficiency anemia. He doesn't believe i'm gluten intolerant, like I said he doesn't believe in alternative medicine and thinks that if the numbers on test results are "normal" you're fine.

Thanks for the replies guys!!! :D

mushroom Proficient

Yeah, most of the docs go strictly by the numbers, but all their patients know that the normal ranges are much too wide. My B12 and folate were at the low end of normal and I felt heaps better with supplementation. I have finally talked my doc into a low dose of synthroid because my thyroid scores were at the extreme ends; I am looking forward to not feeling cold in summers once more :)

Kanney Newbie

I can't help with the iron issue. But the Pale stools and Dark urine are symptoms of Gall Stones. I Had my Gall Bladder removed 7 years ago. I had those symptoms along with extreme pain in chest back after eating.

laula Newbie
Yeah, most of the docs go strictly by the numbers, but all their patients know that the normal ranges are much too wide. My B12 and folate were at the low end of normal and I felt heaps better with supplementation. I have finally talked my doc into a low dose of synthroid because my thyroid scores were at the extreme ends; I am looking forward to not feeling cold in summers once more :)

I work as a Lab Assistant and even though technically I can't interpret the results, I have a pretty good idea of what's "normal". My B12 is too low even though my Dr says it's ok so maybe I'll get back on the supplements again.

I'm trying to get my Dr to take me off synthroid and put me on Armour Thyroid which is a natural thyroid hormone that the body tolerates much better than Synthroid, not only because it's natural, but because it has T3 and T4 whereas synthroid is strictly T4..and synthetic. Take a look into that! I just wish my Dr was more open to alternative medicine.

At least he said to triple my Floravit dose from 10mg twice a day to 30mg twice a day hopefully my hemoglobin will go up from 108 to at least 120...at LEAST. It would be nice to see it a little higher!!!


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



Celiac.com Sponsor (A8-M):



Archived

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

  • 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. - trents replied to suek54's topic in Dermatitis Herpetiformis
      3

      Awaiting dermatitis herpetiformis confirmation following biopsy

    2. - suek54 replied to suek54's topic in Dermatitis Herpetiformis
      3

      Awaiting dermatitis herpetiformis confirmation following biopsy

    3. - trents replied to suek54's topic in Dermatitis Herpetiformis
      3

      Awaiting dermatitis herpetiformis confirmation following biopsy

    4. - suek54 posted a topic in Dermatitis Herpetiformis
      3

      Awaiting dermatitis herpetiformis confirmation following biopsy

    5. - xxnonamexx replied to xxnonamexx's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Healthy Gluten Free Foods low sugar that you found?

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,247
    • Most Online (within 30 mins)
      7,748

    Noisette
    Newest Member
    Noisette
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • trents
      You might also consider a low iodine diet as iodine is know to exacerbate dermatitis herpetiformis. But be careful with that as well as there are health problems that can accrue from iodine deficiency.
    • suek54
      Hi, Yes, the rash has gone. I still get the itches but there is nothing to see now, apart from a lot of discoloured areas where the rash was worst. Occasionally I get a single lump come up, a bit like hives, but no bigger than a pea and it goes after 24hrs and a steroid cream application.  And yes, giving the gluten-free diet 110%. Very careful about any cross contamination.  This is my fifth autoimmune condition so well and truly on that bandwagon. 
    • trents
      Welcome to the the celiac.com community, @suek54! Is the Dapsone getting the rash under control? Are you practicing a gluten free diet yet? The only known cause for dermatitis herpetiformis is celiac disease.
    • suek54
      Hi Im new to this game, so bear with me.  May through to December last year totally miserable, covered literally head to toe in the worst rash ever, itching like I just cant explain. After seven different medics told me just to "keep putting the cream on, whatever it is will go in the end" finally one lovely doc diagnosed dermatitis herpetiformis. Biopsy 6 weeks ago and Dapsone, which I seem to be tolerating OK so far.  The NHS is in permanent backlog so no result yet but just wanted to say hello to anyone else with this maddening condition.
    • xxnonamexx
      I know gluten free proteins like eggs and yogurt but nuts especially trail mixes are tricky as they are hard to find certified gluten free trail mixes especially w/o added sugars. I agree subscription boxes are hit or miss I think I have found RXBar with simple ingredients no added sugars gluten-free might be a great protein bar.
×
×
  • 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.