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

Celiac Or Just Intolerance?


melon-uk

Recommended Posts

melon-uk Rookie

Hi all,

I'm new here and i'm hoping someone can answer my question. I recently went gluten free (3 weeks or so now) and my health has improved big time. i'm wondering though, is it possible to know without diagnosis, wether it's Celiac disease or just gluten intolerance. I know that now i've been gluten free, a blood test would be rather pointless. I went to my doctor last week and he also agreed (because of my digestive symptoms) that it is a problem with gluten, and that to have a test i would need to continue eating gluten, but as I am so much better without it he was happy to leave it at that.

The thing is, over the last 2 years or so, I have had a whole host of very unpleasant problems which all seem to point to problems with my adrenal glands or 'adrenal fatigue' as i have seen it termed (Possibly thyroid, though recent test said all was normal). In june, because of these probs I decided I would try the paleo diet (didn't make a gluten connection at the time) My digestive problems immediately improved, but after about a week, I was taken into hospital with quite severe tachycardia (my pulse was right up to 165 just walking round the supermarket) which is when they did a full blood work (anaemia, thyroid, liver function among other things) and the only thing that came back abnormal was a slightly elevated white blood cell count. It was because of this episode that i ended up seeing the doc last week. unfortunately, the doc only seemed interested in me wearing a 24 hour heart monitor so he could rule out a heart problem (i have no family history of heart issues and no other symptoms to suggest it either). I reeled off a whole long list of all my health problems over the last couple of years which are, persistant yeast infections (which were worse the day after a good workout) severe fatigue (the afternoon after a good morning workout) numbness in my fingers (only during the night, but seems to have now disappeared) yellow skin, blood sugar probs (thirsty after eating a relatively small amount of sugar (though this symptom disappeared a while ago when I went paleo), mild puffiness at the top of my cheeks (improved a ton since gluten free). incidentally, i gained 14 pounds in 1 week at christmas 2010, i ate a fair bit over, but not THAT much!!!!

Some of these symptoms have either improved or gone since i completely cut out gluten, some have not. unfortunately, my doctor the other day, hardly seemed to listen to a word i said even though I told him I thought it was my adrenal hormones.

I do feel that my adrenal pobs are slowly getting better but i'm wondering if the difference in celiac disease and gluten sensitivity would be the difference in there being permanent or temporary damage to my adrenal glands?

incidentally, i've been taking maca root powder the last 5 days, i'm unsure wether this has helped or if it's my body healing from the gluten...

any help would be greatly appreciated but i really don't want to eat gluten again just so i can have a blood test, i'm feeling so much better without it...

Thanks :0)


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



Celiac.com Sponsor (A8-M):



Takala Enthusiast

If you are feeling better without it, and your doctor is in agreement, then continue to eat a diet without gluten. :) Three weeks is not that long a time to recover from all the bad effects, whether it is celiac or gluten intolerance.

Maca and irregular heartbeat discussed here, for starters (and read the comments)

Open Original Shared Link

melon-uk Rookie

Thanx for the reply :0)

I did do a lot of research on the maca powder before i started taking it, but i have only been on it for about 5 days, and I had the tachycardia attack in june. My resting heart rate has actually improved since i went gluten free (almost back down to what it was before all my problems started). I wasn't taking anything at all in fact when it happened, i had just inadvertently been gluten free for about a week and a half. I'm hoping that they will find nothing wrong with my heart and that I will be referred to an endocrinologist. I guess i'm trying to find out which came first, the adrenal probs causing the gluten intolerance or vice versa...

Whichever, the good thing is i'm on the mend and i've persuaded my mum (who still eats gluten and has had many gluten related probs for years) to go to her doctor for a blood test, if they come back as celiac, then i suppose i can probably assume i am also....

GFinDC Veteran

Hi,

I have been taking one 585 mg maca capsule daily for several months and haven't noticed any bad effects. I don't know what would happen if I took 4 a day like the person in the link was doing. I am male too FWIW.

Your mom being tested is good idea. Any first degree blood relatives have a higher chance of being celiac.

carteem Rookie

Hello! I was actually diagnosed with adrenal fatigue and hormone imbalances (estrogen dominance) before dx with celiac. I had coped with it for 3 years. I was constantly adjusting my doses of hormones and adrenal supplements due to fluctuating "hormone symptoms". Just within the last year I had an echocardiogram done due to leg swelling and it was fine. (I did have a few heart pappatations but theye were never consistent). When I started to have Intestinal symptoms my doctor decided to run a celiac panel and it was positive. I called my pharmacist (she is specialized in hormones and works closely with my doctor). She said it all made sense. The inflammatory response of celiac affects the same organs related to hormonal imbalances. She also explained that as we were increasing my hormone doses to help with the symptoms, my body would use that to help feed the inflammatory respone! So it was a double edged sword...my body needed the extra progesterone I was taking but then at the same time it was utilizing it against itself. My pharmacist told me that going gluten free was going to help tremendously. I have been gluten free for 2 months and am now down to 1/3 the progesterone I was taking and have stopped my adrenal supplements. I cannot tell you how much improvement I have seen with my hypoglycemic problems, brain fog, intestinal, and muscle/joint pains, edema, tingling, and fatigue.

Sorry for the long post....I hope it helps!

melon-uk Rookie

Hello! I was actually diagnosed with adrenal fatigue and hormone imbalances (estrogen dominance) before dx with celiac. I had coped with it for 3 years. I was constantly adjusting my doses of hormones and adrenal supplements due to fluctuating "hormone symptoms". Just within the last year I had an echocardiogram done due to leg swelling and it was fine. (I did have a few heart pappatations but theye were never consistent). When I started to have Intestinal symptoms my doctor decided to run a celiac panel and it was positive. I called my pharmacist (she is specialized in hormones and works closely with my doctor). She said it all made sense. The inflammatory response of celiac affects the same organs related to hormonal imbalances. She also explained that as we were increasing my hormone doses to help with the symptoms, my body would use that to help feed the inflammatory respone! So it was a double edged sword...my body needed the extra progesterone I was taking but then at the same time it was utilizing it against itself. My pharmacist told me that going gluten free was going to help tremendously. I have been gluten free for 2 months and am now down to 1/3 the progesterone I was taking and have stopped my adrenal supplements. I cannot tell you how much improvement I have seen with my hypoglycemic problems, brain fog, intestinal, and muscle/joint pains, edema, tingling, and fatigue.

Sorry for the long post....I hope it helps!

Hi,

Thanx for the response. It's really reassuring to hear from someone with similar issues to mine who is well on the mend. I've also started taking vitamin d this week (didn't get a test for it but strongly suspect i was deficient), it's too early to say for sure but i think it's also helping. The sad thing is, i've actually had to find most of these things out for myself as my doctor just didn't make the connection, he pretty much dismissed all the other symptoms i had. Still, at least i know now :0)

carteem Rookie

I too just started taking vitamin d! I was still having soreness/fatigue and requested my doctor draw a level. (I used to work in a rheumatology office and I am very aware of vitamin d and educated many patients). My level was only 13 and I started the high dose 50,000iu once a week (very common rx for such a low level). I too feel great benefits! Keep taking the D but I would also suggest asking your doctor to draw a Viramin D 25(OH) level. (must be 25 OH). See where your level is....you might need a bit more than just over the counter. ...it has great benefits!!!


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. - Jmartes71 replied to Jmartes71's topic in Related Issues & Disorders
      20

      My only proof

    2. - knitty kitty replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      44

      Supplements for those Diagnosed with Celiac Disease

    3. - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      20

      My only proof

    4. - Scott Adams commented on Scott Adams's article in Gluten-Free Grains and Flours
      18

      Cricket Flour Makes Really Good Gluten-Free Bread


  • 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):


  • Upcoming Events

  • Posts

    • Jmartes71
      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
      @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
      @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
      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. 
    • lmemsm
      I've used magnesium taurinate and magnesium taurate vitamins.  Didn't notice much of a difference when I used them.
×
×
  • 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.