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Newly diagnosed Celiac

Aussie Celiac
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Aussie Celiac Newbie
Aussie Celiac
Posted

Well at the ripe old age of 55 I'm newly diagnosed as Celiac. What a surprise.  I was low in iron and this was the only symptom. Well I did get heartburn after eating bread but according to all sources this isn't officially a symptom! Better late than never lol. 

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trents Grand Master
trents
Posted

Welcome to this online community and to the celiac nation, @Aussie Celiac! Let us know if we can help you with anything as you start the journey. By the way, we have forum participants who weren't diagnosed until they were in their 80s. It is often the case that the actual onset of the condition precedes the official diagnosis by many years, especially when symptoms are minimal. I was 50-51 when I was diagnosed but looking back I had laboratory evidence of the onset preceding the diagnosis by 13 years. It probably took years for your celiac nutrient malabsorption to deplete your iron stores such that nothing was left in the bank and your actual hemoglobin levels began to drop.

Scott Adams Grand Master
Scott Adams
Posted

Welcome, and heartburn is a symptom, along with ~200 other symptoms, but many celiacs have no symptoms, however, this does not mean that their health is not at risk should they keep eating gluten--the health risks are the same to all celiacs, regardless of whether or not they have symptoms.

This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):

 

 

knitty kitty Grand Master
knitty kitty
Posted

Welcome to the tribe, @Aussie Celiac! 

How are you progressing?  Are your iron levels getting better?

Aussie Celiac Newbie
Aussie Celiac
Posted
  • Author

Hi there, I haven't been back for another blood test. I had an iron infusion awhile ago and feel a bit better. It's only quite recent so hopefully things will improve. 

Peace lily Apprentice
Peace lily
Posted

Welcome to the forem

i got diagnosed in march with cealiac it’s been a process for me

 I’m strictly gluten free . I went years with suffering with the pain . Don’t want to go thru with that again if I can help it but I found you really have to read the labels on food products . I had a nutritionist for awhile and helped me get thru this who new soy sauce has gluten in it.

plus this forem helps a lot you will get a lot of knowledge.

good luck

peace lily

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    • knitty kitty
      What would a diagnosis tell me?

      By knitty kitty · Posted

      Blood tests for vitamin deficiencies are not an accurate measurement of vitamin stores within cells where the vitamins are actually utilized.  The brain will order cells in tissues and organs to put their stored vitamins into the blood stream to supply the brain and heart.  Deficiency symptoms can appear before there's a change in blood levels.   The eight B vitamins are water soluble.  That means they can get flushed out of your system easily with that Russian Roulette Running.  Some vitamin deficiencies have gastrointestinal symptoms that mimic Celiac Disease.  Thiamine deficiency has gastrointestinal symptoms including diarrhea.  Vitamin C is also water soluble with gastrointestinal symptoms like diarrhea when deficient.  Symptoms of a deficiency in Niacin B3 include diarrhea, and a blistering reaction to sunlight.  Have a nice vacation and keep us posted on your progress when you get back! P.S. There's not a difference between being glutened and being cross contaminated.  You'll get your usual symptoms.  The digestive tract has a limited vocabulary.  
    • xxnonamexx
      What would a diagnosis tell me?

      By xxnonamexx · Posted

      Yes that's why I'm holding off on getting tested until after the summer so no Russian roulette bathroom escapades then I will reintroduce and get tested. The vitamins aren't a supplement they are frozen fruits and vegetables that you blend with water so it's natural fruit and veggies that I have used for 5 years daily. I don't take supplements I did full vitamin bloodwork and all great levels for what I need.
    • knitty kitty
      any advice would be helpful

      By knitty kitty · Posted

      There's a Vegetarian version of the Autoimmune Protocol Diet. There are vegetables that can provide Calcium...broccoli, kale, lentils, tofu.  Talking to a nutritionist can help identify vegetables that can provide you with the minerals and vitamins you need.  Getting dietary advice is part of proper follow up care for people with Celiac disease. tTg testing is used for diagnostic purposes.  It should not be used to signify compliance or healing.  
    • knitty kitty
      What would a diagnosis tell me?

      By knitty kitty · Posted

      Ten grams of gluten per day for two weeks or longer is needed to get antibody levels up high enough so that they can be measured in the blood stream and intestinal damage can be seen in the small intestines.   HOWEVER,  only THREE grams if gluten is needed to produce symptoms...like running to the bathroom.   Some people have much worse symptoms after reintroducing gluten, even with amounts of gluten much less than three grams.  So...getting glutened or cross contamination is a real concern.   You'll be playing Russian Roulette on your vacation.   If you got vitamin levels tested while taking a nutritional shake with vitamins, you've simply measured the vitamins from the shake.  You need to be off vitamin supplementation for eight weeks prior to vitamin testing.  Were more than Vitamin D and B12 tested???  "Normal" levels of these two vitamins don't mean that you're not deficient in the other eleven essential vitamins.  Vitamin D and B12 can be stored in the body a lot longer than the other vitamins, especially the other B vitamins like thiamine. Enjoy your vacation!    
    • trents
      Elimination diet think I may be Gluten tolerant next steps to get tested? Questions

      By trents · Posted

      Mostly because of the inconsistency/irregularity of your symptoms with regard to gluten consumption and other dietary factors. Their doesn't seem to be a real pattern. Histamines are produced by our bodies themselves but they are also found in the foods we eat and the air we breathe (pollen). Certain foods, for example, fermented and aged products, are very high in histamines. Other foods, like bananas and avocados, may be high in histamines but they also may stimulate the body's production of histamines. The body (in the gut) produces a histamine regulating chemical called DAO (Diamine Oxidase). Some people, and this is more common in the celiac community because of damage to the gut lining, don't produce enough DAO to adequately regulate histamine levels in the body. This results in histamine "storms" that produce a variety of symptoms such as headaches, acid reflux and diarrhea. So, I'm just wondering if your symptoms are tied to fluctuating histamine levels that get pushed passed the tipping point at times by various things you may be eating. Anyway, you might want to research it. I also wonder if you have IBS.
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