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

Getting Enough Calcium & Vitamins

squirmingitch

By squirmingitch
in Dermatitis Herpetiformis

Recommended Posts

squirmingitch Veteran
squirmingitch
Posted

I had a bone scan last year (before I knew I had celiac)& it showed I had very mild osteopenia. Over the years I had tried every type of calcium supplement imaginable & they ALL gave me bad indigestion. Oyster calcium, the chocolate chews, liquid calcium gelcaps, & all the normal calcium pills. In order to increase my calcium intake I began drinking soy milk as it has more calcium than milk or yogurt. Now, since the soy milk has so much iodine in the form of carageenan that's out. And since dairy is to be in limited quantities (if at all) then the calcium from that is not a factor.

I had also tried B vitamins for years but they gave me indigestion also.

So how do you guys make sure you get enough calcium? And for that matter all the other vitamins especially the B's?

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

Celiac.com Sponsor (A8-M):


Marilyn R Community Regular
Marilyn R
Posted

I

I had a bone scan last year (before I knew I had celiac)& it showed I had very mild osteopenia. Over the years I had tried every type of calcium supplement imaginable & they ALL gave me bad indigestion. Oyster calcium, the chocolate chews, liquid calcium gelcaps, & all the normal calcium pills. In order to increase my calcium intake I began drinking soy milk as it has more calcium than milk or yogurt. Now, since the soy milk has so much iodine in the form of carageenan that's out. And since dairy is to be in limited quantities (if at all) then the calcium from that is not a factor.

I had also tried B vitamins for years but they gave me indigestion also.

So how do you guys make sure you get enough calcium? And for that matter all the other vitamins especially the B's?

I'm just doing a multi-vitamin. I supplement that with a Calcium tab and D-3 drops. I make my own soup stocks in the pressure cooker or slow cooker. I have a weird craving for marrow bone. I think it's good for us.

Jestgar Rising Star
Jestgar
Posted

Green leafy vegetables. :)

itchy Rookie
itchy
Posted

Why do you feel you have to avoid iodine?

Preventing bone disease seems a higher priority than preventing DH. In theory DH will go away on its own once you get the gluten out of your diet and leave enough time.

Calcium and iodine are both essential to health, wheat gluten is not.

Also, I'm curious why you eliminate dairy? I still can't tolerate raw milk, but I eat loads of yogurt, cottage cheese, sour cream, frozen yogurt, and cheese without apparent ill effect.

Finally, are you sure that you are free enough of gluten? Many digestive problems will go away once the guts get a chance to heal. Maybe as you have gluten out of the diet you are not as senstive to those supplements as you once were? Just checking.

itchy Rookie
itchy
Posted

Hi squirmingitch

Just checked a couple earlier posts, where you mention you eat hash browns and don't eat oatmeal.

Personally I consider hash browns a high risk due to browning agents containing wheat that are used to make them look nice fried up. Without checking labels I wouldn't know, however.

Where I live it is easy to buy wheat free oatmeal. I eat loads of oatmeal without any problems. Others may not be able to tolerate oat products, but most of the literature suggests oatmeal is okay for celiacs, at least most of us. Actually I ate regular oatmeal without any problems previously, suggesting that most commercial oatmeal has quite low contamination with wheat. I prefer not to trust that theory however, now that wheat free oatmeal is easy to find (at least in Canada).

Finally, I have the same reaction to baked goods that you seem to have. I still get indigestion from gluten free baked goods. I prefer to limit these, which is a problem because well meaning friends seem to think that because I eat gluten free that I therefore must want to eat a lot of gluten free baked goods.

pricklypear1971 Community Regular
pricklypear1971
Posted

Why do you feel you have to avoid iodine?

Preventing bone disease seems a higher priority than preventing DH. In theory DH will go away on its own once you get the gluten out of your diet and leave enough time.

Calcium and iodine are both essential to health, wheat gluten is not.

Also, I'm curious why you eliminate dairy? I still can't tolerate raw milk, but I eat loads of yogurt, cottage cheese, sour cream, frozen yogurt, and cheese without apparent ill effect.

Finally, are you sure that you are free enough of gluten? Many digestive problems will go away once the guts get a chance to heal. Maybe as you have gluten out of the diet you are not as senstive to those supplements as you once were? Just checking.

The OP can answer for herself but I will chime in on the desperation to alleviate DH....

Uhm.....when I am in the middle of a DH episode there is absolutely NOTHING more important than making the itching, pain and burning stop. Not to mention the longing to have your brain not constantly occupied by the mental challenge of stopping your hands from scratching. Makes the thrill of shopping for "the perfect" clothes that don't touch or irritate the lesions (btw, such clothes don't exist) even better....

I'm serious when I say this...

If the devil appeared in front of me at 8 pm as those damn sores were filling, when that insatiable itching starts, when I am seriously in danger of losing it....I'd probably agree to any terms offered for a cure. Especially after almost 3 years of incessant torture.

Did I mention the part about cringing when people touch you, especially your excited child? The inability to fully extend your arms because the scabs rip open? What about the wet spots on your clothes where the sores weep?

Dairy is high in iodone. Iodine withdrawal is temporary.

itchy Rookie
itchy
Posted

Prickly Pear: I didn't mean to minimise the suffering. I've certainly experienced excruciating symptoms of DH and I can well imagine that there are others that have it much, much worse than me, especially judging from the photos on the internet.

Perhaps my observations are coloured by the fact I've never been able to detect a strong response to iodine containing food. I vary my diet quite a lot over time, and one would think that if I got a strong response from iodine containing foods, it would be noticeable. I continue to watch for it.

Which leads to my point that perhaps not everyone should assume they have to get rid of iodine, if it means not dealing with other health issues. I think people should check it out for themselves for their own response.

I don't know that squirmingitch hasn't done that.

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

Celiac.com Sponsor (A8-M):


pricklypear1971 Community Regular
pricklypear1971
Posted

The only way to know is to try...

squirmingitch Veteran
squirmingitch
Posted
  • Author

Itchy, ---- What pricklypear said. I couldn't have stated it better myself!

The iodine withdrawal is temporary. And it is in line of a test to see how I react. One has to do these things sometimes. AND I was suffering so badly --- well --- that ole devil prickly mentioned? We would be fast friends that devil & me. I have considered the filet knife at times to peel my skin off. Surely the pain of that would be better than the itching. At least it would be different.

BTW, the hash browns are potatoes. No other ingredients. No browning agents. Nothing but potatoes (peeled of course).

tarnalberry Community Regular
tarnalberry
Posted

Studies have shown that supplementing magnesium, necessary for the use of calcium to build bone, is even more important in celiacs than calcium. Make sure you're getting ample D as well.

tarnalberry Community Regular
tarnalberry
Posted

Oh, and weight bearing exercise, and lots of it!

squirmingitch Veteran
squirmingitch
Posted
  • Author

Thank you everyone! Ah yes, the leafy greens of course. I did know that but couldn't think of it. Chalk it up to temporary insanity due to intense itching & hunger. This stuff is making me stupid. But I know you've all been there, done that & it's nice to have you to turn to to keep me straight. And I do hope to discover down the road that I can take supplements because the problem with them stemmed from the celiac disease.

The magnesium is a good tip. I didn't know that.

I have long been a fan of weight bearing exercise. Tarnalberry, I see you teach yoga --- I taught ballet & practice the exercises throughout the day in the way I move doing anything around the house. Also love to walk with the dog which is a great weight bearing exercise.

I made a run to the store this morning & couldn't find cream of buckwheat so will have to order it online. Picked up some refried beans, stocked up on more fruit & fruit juices, unsalted nuts ( not many unsalted choices there) & picked up 6 Larabars, 2 of which went into the glove compartment for those desperate snacks away from home. Was getting shaky so I inhaled one while putting away groceries & YUM, YUM, YUM!!!!!! They are GOOOOOOD!

Threw myself a fine pity party last week at one point but I suppose you guys are familiar with that too. Got that over with & am ready to move forward with renewed strength.

Will have to get the Udi's bread online too as locally only Schar is available.

I think I'll be able to make the next few days without getting hungry. Wooooooo Hoooooo!!!! :D

pricklypear1971 Community Regular
pricklypear1971
Posted

If you can find Kind+ bars try one.

IMO better than Lara.

squirmingitch Veteran
squirmingitch
Posted
  • Author

I'll look for them online with everything else on my list. Thanks!

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,899
    • Most Online (within 30 mins)
      7,748
    dcarter1682
    Newest Member
    dcarter1682
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • trents
      New (possible) celiac diagnosis

      By trents · Posted

      Welcome to the forum, @Judy M! Yes, he definitely needs to continue eating gluten until the day of the endoscopy. Not sure why the GI doc advised otherwise but it was a bum steer.  Celiac disease has a genetic component but also an "epigenetic" component. Let me explain. There are two main genes that have been identified as providing the "potential" to develop "active" celiac disease. We know them as HLA-DQ 2.5 (aka, HLA-DQ 2) and HLA-DQ8. Without one or both of these genes it is highly unlikely that a person will develop celiac disease at some point in their life. About 40% of the general population carry one or both of these two genes but only about 1% of the population develops active celiac disease. Thus, possessing the genetic potential for celiac disease is far less than deterministic. Most who have the potential never develop the disease. In order for the potential to develop celiac disease to turn into active celiac disease, some triggering stress event or events must "turn on" the latent genes. This triggering stress event can be a viral infection, some other medical event, or even prolonged psychological/emotional trauma. This part of the equation is difficult to quantify but this is the epigenetic dimension of the disease. Epigenetics has to do with the influence that environmental factors and things not coded into the DNA itself have to do in "turning on" susceptible genes. And this is why celiac disease can develop at any stage of life. Celiac disease is an autoimmune condition (not a food allergy) that causes inflammation in the lining of the small bowel. The ingestion of gluten causes the body to attack the cells of this lining which, over time, damages and destroys them, impairing the body's ability to absorb nutrients since this is the part of the intestinal track responsible for nutrient absorption and also causing numerous other food sensitivities such as dairy/lactose intolerance. There is another gluten-related disorder known as NCGS (Non Celiac Gluten Sensitivity or just, "gluten sensitivity") that is not autoimmune in nature and which does not damage the small bowel lining. However, NCGS shares many of the same symptoms with celiac disease such as gas, bloating, and diarrhea. It is also much more common than celiac disease. There is no test for NCGS so, because they share common symptoms, celiac disease must first be ruled out through formal testing for celiac disease. This is where your husband is right now. It should also be said that some experts believe NCGS can transition into celiac disease. I hope this helps.
    • Judy M
      New (possible) celiac diagnosis

      By Judy M · Posted

      My husband has had lactose intolerance for his entire life (he's 68 yo).  So, he's used to gastro issues. But for the past year he's been experiencing bouts of diarrhea that last for hours.  He finally went to his gastroenterologist ... several blood tests ruled out other maladies, but his celiac results are suspect.  He is scheduled for an endoscopy and colonoscopy in 2 weeks.  He was told to eat "gluten free" until the tests!!!  I, and he know nothing about this "diet" much less how to navigate his in daily life!! The more I read, the more my head is spinning.  So I guess I have 2 questions.  First, I read on this website that prior to testing, eat gluten so as not to compromise the testing!  Is that true? His primary care doctor told him to eat gluten free prior to testing!  I'm so confused.  Second, I read that celiac disease is genetic or caused by other ways such as surgery.  No family history but Gall bladder removal 7 years ago, maybe?  But how in God's name does something like this crop up and now is so awful he can't go a day without worrying.  He still works in Manhattan and considers himself lucky if he gets there without incident!  Advice from those who know would be appreciated!!!!!!!!!!!!
    • Scott Adams
      Patiently Waiting to See Results

      By Scott Adams · Posted

      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
    • Scott Adams
      Gluten free beer ?

      By Scott Adams · Posted

      In this case the beer is excellent, but for those who are super sensitive it is likely better to go the full gluten-free beer route. Lakefront Brewery (another sponsor!) has good gluten-free beer made without any gluten ingredients.
    • trents
      Patiently Waiting to See Results

      By trents · Posted

      Welcome to the forum, @catsrlife! Celiac disease can be diagnosed without committing to a full-blown "gluten challenge" if you get a skin biopsy done during an active outbreak of dermatitis herpetiformis, assuming that is what is causing the rash. There is no other known cause for dermatitis herpetiformis so it is definitive for celiac disease. You would need to find a dermatologist who is familiar with doing the biopsy correctly, however. The samples need to be taken next to the pustules, not on them . . . a mistake many dermatologists make when biopsying for dermatitis herpetiformis. 
×
×
  • 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.