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

New Celiac Really Rough Start

Kquad

Recommended Posts

Kquad Apprentice
Kquad
Posted

I was diagnosed about a week ago after more than 8 years of being told I had IBS. I have always been a very active ( most people call me hyperactive) person. Things began to spiral down about a year ago. I began to fatigue more easily and because of the growing fog in my head, my caffeine intake blossomed to more than 10 cups of coffee daily. My memory declined, to the point everyone was noticing. I was also eating about 4000 calories a day and always ravenous. I never gained an ounce. Then things really went south and the GI symptoms became much worse. About a month ago, I was stopped at a light , became disoriented or distracted ( I don't know what happened). I took of on red and was T-boned at about 55 mph. No one was hurt fortunately. My wife was about to take me in for Alzheimers testing ( I am 41). I went to a new MD and said I was falling apart and that this could not be IBS. My IgA came back positive.

I was relieved to have a diagnosis and am now on a strict diet for a week with 1 meal exception per another MD ( long story). I no longer need much coffee to be as alert, however, my body seems to be getting worse. 2 days ago I was feeling better, but today I could barely lift my arms and my face looked sunburned. The next door ER nurse ran over and poured propel down my throat, and it helped quite a bit. I still fill very heavy, but much better. For the first 4 days I ate very little, because of complete loss of appetite. The last few days I try to watch the clock so I eat. It is still only about 1/3 of my own intake, but I am forcing that. My labs came back normal as far as electrolytes and blood lab values, many were in the low normal, but all were normal. Has anyone else had a rough start like this? I was really scared tonight

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

Celiac.com Sponsor (A8-M):


mushroom Proficient
mushroom
Posted

The low normal values of nutrients should be supplemented. These values represent what is in your blood stream, but not necessarily what is available to your cells. Most people don't feel better until their values are mid-range. This is especially true for B12, D, folate, magnesium.

What is this business about "except for one meal"? Does this mean you are supposed to eat one gluten meal a day or a week? I would like to hear that long story :rolleyes::blink: Was today the day after you had eaten that one meal by chance? What is propel? Is it something to increase gastrointestinal motility? And why did she give it to you? I would be interested.....

The reason you could eat 4000 calories a day and never gain an ounce was because you were not absorbing anything you ate. As your gut heals you may find yourself eating more again to make up for the lost nutrients but right now you are going through a major readjustment phase and your body is not quite sure what to do yet. And if the "except for one meal" involves gluten, then you are undoing all the good that eating gluten free is doing and really confusing your body. Post some more and give us the whole story. :D

GlutenFreeManna Rising Star
GlutenFreeManna
Posted

I was relieved to have a diagnosis and am now on a strict diet for a week with 1 meal exception per another MD ( long story).

I agree with Mushroom. Please explain what you mean by this....

Kquad Apprentice
Kquad
Posted
  • Author

I agree with Mushroom. Please explain what you mean by this....

One MD wanted me to have a biopsy and sent me to a Gastro-enterologist and told me to go back on Gluten. I did for one meal and then got a call from gastroenterology to come right over. He told me I should go back on the diet, because he believed I have Celiac and all of false negatives with biopsies.

Kquad Apprentice
Kquad
Posted
  • Author

The low normal values of nutrients should be supplemented. These values represent what is in your blood stream, but not necessarily what is available to your cells. Most people don't feel better until their values are mid-range. This is especially true for B12, D, folate, magnesium.

What is this business about "except for one meal"? Does this mean you are supposed to eat one gluten meal a day or a week? I would like to hear that long story :rolleyes::blink: Was today the day after you had eaten that one meal by chance? What is propel? Is it something to increase gastrointestinal motility? And why did she give it to you? I would be interested.....

The reason you could eat 4000 calories a day and never gain an ounce was because you were not absorbing anything you ate. As your gut heals you may find yourself eating more again to make up for the lost nutrients but right now you are going through a major readjustment phase and your body is not quite sure what to do yet. And if the "except for one meal" involves gluten, then you are undoing all the good that eating gluten free is doing and really confusing your body. Post some more and give us the whole story. :D

Propel is an electrolyte water. ( Can't drink Gator-aid, royalty goes to University of Florida, and I went to Florida state :)). I ate the meal Monday after noon.

Jill0711 Rookie
Jill0711
Posted

First of all, you will not get better until you eliminate gluten completely. I found that when I went back on gluten for testing (per doctors orders) that my body got mad at me and went a little crazy and I ended up in the ER twice before I decided that I didn't care about the testing anymore. Second, even when you eliminate gluten completely, it takes the body some time to heal. As that is happening, you may go through gluten withdrawal, craving fats (in my case), and even having some really rough days. You definitely don't want to add dehydrated to that mix so make sure you are at least drinking enough fluids. After I eliminated gluten completely, within a few days, my appetite came back and I was starving :) Also, at the very least, you need to be taking a good multivitamin and probably add in some B12 and folate. When your body is not absorbing nutrients from food, these levels are low. My initial bloodwork before going gluten free, my levels were normal. Two months later, several were low so it takes time for the bloodwork to reflect what is going on in your body. If results are low normal, it doesn't take much to push them off the low end, especially if you aren't eating anything.

GlutenFreeManna Rising Star
GlutenFreeManna
Posted

One MD wanted me to have a biopsy and sent me to a Gastro-enterologist and told me to go back on Gluten. I did for one meal and then got a call from gastroenterology to come right over. He told me I should go back on the diet, because he believed I have Celiac and all of false negatives with biopsies.

Ok, that makes sense. That's not a long story at all. So you decided to skip the biopsy right? Just that one meal could have really messed up any progress you made. 1 week is not a very long time. Do be sure to check for all sources of cc--get new toaster, collender, cutting boards (if you have wood or plastic) and even chuck any old non-stick pans.

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.

Go to topic listing

  • 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. asaT
      - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      48

      Supplements for those Diagnosed with Celiac Disease

      plant sources of calcium, such as spinach, have calcium bound to oxalates, which is not good. best source of calcium is unfortunately dairy, do you tolerate dairy? fermented dairy like kefir is good and or a little hard cheese. i do eat dairy, i can only take so much dietary restriction and gluten is hard enough! but i guess some people do have bad reactions...
    2. asaT
      - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      48

      Supplements for those Diagnosed with Celiac Disease

      i take b12, folate, b2, b6, glycine, Nac, zinc, vk2 mk4, magnesium, coq10, pqq, tmg, creatine, omega 3, molybdnem (sp) and just started vit d. quite a list i know. I have high homocysteine (last checked it was 19, but is always high and i finally decided to do something about it) and very low vitamin d, 10. have been opposed to this supp in the past...
    3. nanny marley
      - nanny marley replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      20

      Insomnia help

      Great advise there I agree with the aniexty part, and the aura migraine has I suffer both, I've also read some great books that have helped I'm going too look the one you mentioned up too thankyou for that, I find a camomile tea just a small one and a gentle wind down before bed has helped me too, I suffer from restless leg syndrome and nerve pain hence I...
    4. David Blake
      - David Blake commented on Scott Adams's article in Product Labeling Regulations
      1

      FDA Moves to Improve Gluten Labeling—What It Means for People With Celiac Disease

      My question I have proposed to the FDA through their website is why Prescription and OTC drug manufacturers are not required to list what binding ingredients were used to bine the drug? They list this on Capsules which are made of cellulose but not on pills? As it stands I or my pharmacist must contact the manufacturer to find out and my list is long from...
    5. nanny marley
      - nanny marley replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      nothing has changed

      I agree there I've tryed this myself to prove I can't eat gluten or lactose and it sets me back for about a month till I have to go back to being very strict to settle again
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,343
    • Most Online (within 30 mins)
      7,748
    emoryprose
    Newest Member
    emoryprose
    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

    • asaT
      Supplements for those Diagnosed with Celiac Disease

      By asaT · Posted

      plant sources of calcium, such as spinach, have calcium bound to oxalates, which is not good. best source of calcium is unfortunately dairy, do you tolerate dairy? fermented dairy like kefir is good and or a little hard cheese. i do eat dairy, i can only take so much dietary restriction and gluten is hard enough! but i guess some people do have bad reactions to it, so different for everyone.  
    • asaT
      Supplements for those Diagnosed with Celiac Disease

      By asaT · Posted

      i take b12, folate, b2, b6, glycine, Nac, zinc, vk2 mk4, magnesium, coq10, pqq, tmg, creatine, omega 3, molybdnem (sp) and just started vit d. quite a list i know.  I have high homocysteine (last checked it was 19, but is always high and i finally decided to do something about it) and very low vitamin d, 10. have been opposed to this supp in the past, but going to try it at 5k units a day. having a pth test on friday, which is suspect will be high. my homocysteine has come down to around 9 with 3 weeks of these supplements and expect it to go down further. i also started on estrogen/progesterone. I have osteoporosis too, so that is why the hormones.  anyway, i think all celiacs should have homocysteine checked and treated if needed (easy enough with b vit, tmg). homocysteine very bad thing to be high for a whole host of reasons. all the bad ones, heart attack , stroke, alzi, cancer..... one of the most annoying things about celiacs (and there are so many!) is the weight gain. i guess i stayed thin all those years being undiagnosed because i was under absorbing everything including calories. going gluten-free and the weight gain has been terrible, 30#, but i'm sure a lot more went into that (hip replacement - and years of hip pain leading to inactivity when i was previously very active, probably all related to celiacs, menopause) yada yada. i seemed to lose appetite control, like there was low glp, or leptin or whatever all those hormones are that tell you that you are full and to stop eating. my appetite is immense and i'm never full. i guess decades or more ( i think i have had celiacs since at least my teens - was hospitalized for abdominal pain and diarrhea for which spastic colon was eventually diagnosed and had many episodes of diarrhea/abdominal pain through my 20's. but that symptom seemed to go away and i related it to dairy much more so than gluten. Also my growth was stunted, i'm the only shorty in my family. anyway, decades of malabsorption and maldigestion led to constant hunger, at least thats my theory. then when i started absorbing normally, wham!! FAT!!!    
    • nanny marley
      Insomnia help

      By nanny marley · Posted

      Great advise there I agree with the aniexty part, and the aura migraine has I suffer both, I've also read some great books that have helped I'm going too look the one you mentioned up too thankyou for that, I find a camomile tea just a small one and a gentle wind down before bed has helped me too, I suffer from restless leg syndrome and nerve pain hence I don't always sleep well at the best of times , racing mind catches up I have decorated my whole house in one night in my mind before 🤣 diet changes mindset really help , although I have to say it never just disappears, I find once I came to terms with who I am I managed a lot better  , a misconception is for many to change , that means to heal but that's not always the case , understanding and finding your coping mechanisms are vital tools , it's more productive to find that because there is no failure then no pressure to become something else , it's ok to be sad it's ok to not sleep , it's ok to worry , just try to see it has a journey not a task 🤗
    • nanny marley
      nothing has changed

      By nanny marley · Posted

      I agree there I've tryed this myself to prove I can't eat gluten or lactose and it sets me back for about a month till I have to go back to being very strict to settle again 
    • trents
      Supplements for those Diagnosed with Celiac Disease

      By trents · Posted

      You may also need to supplement with B12 as this vitamin is also involved in iron assimilation and is often deficient in long-term undiagnosed celiac disease.
×
×
  • 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.