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New to this , need some info please

Feesa

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Feesa Apprentice
Feesa
Posted

Hello everyone or anyone,

I was just told a week ago that I am Celiac....Nice news  to find out because I thought I had been dying for about 8 months. Trips to the hospital with gas pain in chest and arms. Headaches and also major energy problems. How long should or could it take to start to feel better? I know It's going to take time however I have to take pills to keep me calm. I am finding that now when I eat that the gas is worse it now sits in my shoulders and back as well as my chest...Please tell me this has happened to other people...Any info would be amazing.

 

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Ennis-TX Grand Master
Ennis-TX
Posted

I hear you, I thought I was dying going crazy, and was running a bucketlist prior to dia. My issues were a mix of it effecting my brain, nervous system, guts, etc. My primary issues was the brain fog, confusion, brain damage, nerve damage, and bad gas and constipation lasting 8-10 days.

The worst of it will pass with the gas in 2-6 weeks, it can take 6 months and up to 2 years for significant damage to heal. The issues with the stress come from the inability to absorb certain nutrients. You will have to take a b-vitamin supplement  and probably a magnesium supplement to help with them. There are many others such as folate, iron, vitamin D, etc. I would read up on them and see if these are likely to be them. You can check the links below to see what I do to manage mine and my diet.

Welcome to the forums, this is great place to find out about many of the issues associated with this disease and get help. There is a huge learning curve to the diet and you will have to clean out your house, fridge, and change a lot of things out to go 100% gluten free without contamination issues. Things will get a tad worse before they get better, you might develop other food issues or find out you have some. But in the end you will prolong your life, and after some healing start to enjoy life more and more.

 

https://www.celiac.com/forums/topic/91878-newbie-info-101/

https://www.celiac.com/forums/topic/117090-gluten-free-food-alternatives-list/

https://www.celiac.com/forums/topic/116482-supplement-and-foods-you-take/

 

Feesa Apprentice
Feesa
Posted
  • Author

Thank you so much for this info!! I have a place to start, Like most people I was told yes you are Celiac and then nothing..I get to see the Dr in July but have been running blind with this. I am happy to see this and know if I have questions I can ask, Someone may have ideas!!

 

cyclinglady Grand Master
cyclinglady
Posted

Welcome!  Glad you found us.  It is nice to have access to people who are in the same boat.  Ennis has provided you with some good links.  Questions?  Just ask!  

Healing?  Takes time.  Everyone is different.  

 

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  • Recent Activity

    1. trents
      - trents replied to heart390's topic in Introduce Yourself / Share Stuff
      5

      Why now?

      Sorry for rambling on so much. It was not clear to me from you first post that, although you have known for several years that gluten had been causing you distress, that you had already eliminated it from your diet.
    2. heart390
      - heart390 replied to heart390's topic in Introduce Yourself / Share Stuff
      5

      Why now?

      Because a close friend has had Celiac for years - I've eliminated gluten after the ER said all I had was a huge pocket of gas several years ago. The gluten will be my 4th autoimmune disease. Thanks so much for all your input!!!
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      Confused about HLA-DQ Celiac gene test result

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      - trents replied to heart390's topic in Introduce Yourself / Share Stuff
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      Why now?

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      Confused about HLA-DQ Celiac gene test result

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    • trents
      Why now?

      By trents · Posted

      Sorry for rambling on so much. It was not clear to me from you first post that, although you have known for several years that gluten had been causing you distress, that you had already eliminated it from your diet.
    • heart390
      Why now?

      By heart390 · Posted

      Because a close friend has had Celiac for years - I've eliminated gluten after the ER said all I had was a huge pocket of gas several years ago.  The gluten will be my 4th autoimmune disease.  Thanks so much for all your input!!!
    • trents
      Confused about HLA-DQ Celiac gene test result

      By trents · Posted

      @ainsleydale1700, the additional test information you provided is very significant! Here is the important part: "This test detects IgG antibodies to tTG (tissue transglutaminase), and was performed because your IgA level is below normal. The immune response that occurs in celiac disease often leads to IgG antibodies against tTG." It looks to me that you may be a "seronegative" celiac. The frontline diagnostic tests for celiac disease are IGA tests, especially the tTG-IGA. However, another IGA test ("total IGA") was done to check you for IGA deficiency and you were found to be deficient. That means that the usual IGA tests done to diagnose celiac disease, such as the tTG-IGA, would not be reliable. That is why the IGG testing was done "reflexively" (which means in response to the results of a previous test, i.e., the total IGA test.). The IGG tests are not quite as reliable as the IGA tests for diagnosing celiac disease, meaning, there are more "other" possible causes for elevated IGG test scores. The IGG test did give a borderline positive result, however, so the physician ordered the endoscopy with biopsy to check for damage to the small bowel lining that would be caused by untreated (continuing to consume gluten) celiac disease. The biopsy showed no damage so the doc concluded you do not have celiac disease. However, the monkey wrench in the gears of the doc's conclusion is that he gave you permission to proceed with the gluten free diet which would have allowed for healing of the small bowel lining to commence. How long were you gluten free before the biopsy was taken? And how much damage to the small bowel lining was there to begin with? If the damage was minimal, it might have been fully healed by the time the biopsy was done. And the symptoms you describe involving vitamin and mineral deficiencies, tooth enamel loss, cessation of menses, neuropathy, constipation alternating with diarrhea . . . IMO all scream of celiac disease as opposed to NCGS.
    • trents
      Why now?

      By trents · Posted

      Yes, other health challenges and even severe prolonged emotional distress are thought to be potential triggers for the latent celiac genes. Let me encourage you to get tested for celiac disease as soon as possible so that you can get on with eliminating gluten from your diet, which itself will involve a considerable learning curve in order to become consistent at it. Even pills and meds can contain gluten because wheat starch can be used as a filler. It's important to know if you have celiac disease for two reasons. First, it damages the lining of the small bowel and, over time, wears down those billions of little fingers that make up the lining and produce a huge surface area for absorbing nutrients from the food we eat. The small bowel is essentially the place where all of our nutrition is absorbed. Long term undiagnosed/ignored celiac disease therefore results in nutritional deficiencies even when we are eating well. You don't need that with the other health issues you are dealing with.  Second, many or most people find it difficult to be consistent with the gluten free diet if they don't have a formal diagnosis of celiac disease. It is just too inconvenient and limiting and they begin to rationalize that, "Well, maybe my problems are due to something else." Human nature has a remarkable capacity to rationalize. It can be argued that you can cheat a little bit on the gluten free diet with NCGS because it only creates a little discomfort and distress but not damage. That doesn't work with celiac disease. So, I feel it is important to know which you are dealing with, especially in the case where you have not yet begun the gluten free diet and you are a good candidate for beginning testing. Many people make the mistake of experimenting with the gluten free diet before they get tested for celiac disease and then they have to go back on gluten for weeks or months, the so-called "gluten challenge", in order to achieve valid test results. By the way, autoimmune diseases tend to cluster. When you get one, it is very common to develop others in time. 
    • ainsleydale1700
      Confused about HLA-DQ Celiac gene test result

      By ainsleydale1700 · Posted

      Thank you!  I have the classic symptoms while eating gluten-constipation, diarrhea, weight loss, loss of appetite, etc.  My main problems right now are elsewhere in my body.  Dental issues...my teeth started breaking.  I had two teeth break in the past month.  My dentist looked at my teeth with a camera and said I have no enamel left.  Im really struggling with neuropathy, and gynecological conditions.  My periods stopped 6 years ago and Im not in perimenopause or menopause.  When I consume gluten, my resting HR goes up about 30 points, and takes a week or so to normalize.  The list goes on, its very overwhelming Ongoing vitamin D deficiency, magnesium, iron, blood creatinine is always low, dont know if thats relevant. Below is from the Celiac panel, otherwise the results were normal.  Not crazy high, but I wasnt aware the Celiac panel was included in the bloodwork.  So I didnt prepare for it in advance, and Ive been on a gluten-free diet for the past 4 years High t-Transglutaminase (tTG) IgG: 7, Reference Interval: 0-5, Unit: U/mL This test detects IgG antibodies to tTG (tissue transglutaminase), and was performed because your IgA level is below normal. The immune response that occurs in celiac disease often leads to IgG antibodies against tTG.   I know I have a bad reaction to gluten.  But with the low likelihood of Celiac, any guidance on other paths to explore would be greatly appreciated!  Ive been trying to figure this out for years now, and more issues keep coming up.  It has been so overwhelming.  Thanks again.
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