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

An Update On Me.....

Canadian Karen

By Canadian Karen
in Coping with Celiac Disease

Recommended Posts

Canadian Karen Community Regular
Canadian Karen
Posted

Okay, here's the scoop since I haven't done an update in ages..... in fact, I have hardly kept in touch with anyone, just withdrawing into myself, which I know is the worst thing for me to do.

Anyway, I got some great news and not so great news when I went to see him Monday. He had the pathologist pull my slides of my biopsy for further review. The report that he got back is that there is NO INDICATION of cell change, indicating Type II Refractory Sprue (for those not fully up on this, there are two types of Refractory Celiac Sprue, Type I and Type II. Type II is the one that cell change has already taken place and the prognosis is not good - within five years usually it will kill you.) So, all in all, GREAT NEWS!!!!!!!!!!

Not so great news:

1) My iron is not even registering, so IV systemic iron is next.

2) He is sending me for a cortisol test next week. He indicated he believes that I could possibly have Addison's Disease, based on what has been happening to me lately.

a) I can hardly get off the couch or out of bed half the time and I have never felt such profound exhaustion in my life. I am such a "go go go" person, this is totally opposite to what is "me".....

B) My blood pressure, which has always been on the low side, is now getting lower and lower.

c) I am craving salt ALL THE TIME.

He believes that maybe my spastic immune system has taken up new targets: my adrenals and my pituitary glands. It's already done a number on my gut and my thyroid, I guess it has decided to move on! <_<

After reading about Addison's, I have to admit, it does sound an awful lot like me..... :unsure:

Well, we will see after the test results come back.

Hugs to all,

Karen

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

Celiac.com Sponsor (A8-M):


blueeyedmanda Community Regular
blueeyedmanda
Posted

Well, good to hear about the sprue!!! That is great news. The other news, although not great it could be much worse and it seems like everything will be taken care of. My sisters Iron wouldn't register either and she was on iron pills and they were high dose since she was pregnant. It was very scary with her for a few weeks.

Canadian Karen Community Regular
Canadian Karen
Posted
  • Author
Well, good to hear about the sprue!!! That is great news. The other news, although not great it could be much worse and it seems like everything will be taken care of. My sisters Iron wouldn't register either and she was on iron pills and they were high dose since she was pregnant. It was very scary with her for a few weeks.

From what I have read, it is manageable, thank God....

Although the prospect of me being on steriods for the rest of my just has me jumping for joy. <_<

The last time I was on prednisone, it was not a pretty sight! :o:ph34r:

Lisa Mentor
Lisa
Posted

Karen,

It is sooo great to hear from you. We sure do miss you.

It sounds like you finally have a doctor who knows that he/she is doing. I know that you have been waiting for some answers for a long long time.

I am going to look up Addisson's. But, I wanted to let you know that I think about you often and need you to get back into the swing as soon as you can. It's just not the same place around here without you. :(

Hugs back

mamaw Community Regular
mamaw
Posted

Hello Karen

sorry you have not been doing well..... some of your symptons sound just like mine but my problems are coming from my thyroid...

Addison's can usually be controlled . I will keep you in my prayers & please keep us posted on how you are making out..........

Hugs to you. BY the way I LOVE your avatar......

mamaw

Ursa Major Collaborator
Ursa Major
Posted

Karen, your info is confusing. You are saying

The report that he got back is that there is NO INDICATION of cell change, indicating Type II Refractory Sprue (for those not fully up on this, there are two types of Refractory Celiac Sprue, Type I and Type II. Type II is the one that cell change has already taken place and the prognosis is not good - within five years usually it will kill you.)

According to what you are saying here, you have the type that will kill you in five years, yet that is good news? I suspect that there is a typo in here.

When you get the testing for Addison's done, make sure you get at least two draws of blood for the cortisol levels done that day. In fact, four is even better. The first one at 8:00 AM after fasting, the next at noon, the third at 4:00 PM, and the last at 8:00 PM. But you should at least have the one at eight in the morning and at four in the afternoon.

Also, you need to have your aldosterone level checked. Two of the symptoms of low aldosterone are low blood pressure and salt cravings.

I was also craving an insane amount of meat. Now I know why. When your adrenals aren't functioning you pee out most of your protein (and your salt, hence salt cravings).

I now take 25mg of hydrocortisone (to make up for the cortisol my adrenals weren't making) and 0.15mg of fludrocortisone (because of extremely low aldosterone levels) a day, and I am doing sooooooooo much better! Also, now I am able to handle my thyroid meds, because my body couldn't use them before because of adrenal insufficiency (one type of Addison's disease).

Please be aware of our crazy lab's interpretations here in Canada. My cortisol levels came back in the lower third of the so-called normal range (actually, anything in the lower third is definitely NOT normal). The 'normal' range for aldosterone here is 60 to 780 (an insanely large range). If you do research you will find that actually, anything below the upper third of that range is reason for concern and needs to be addressed. My level was 73. A long way from the upper third (in reality, anything below 500 is a problem).

My doctor had a nurse call me to tell me that 'everything came back normal, and nothing needs to be done'. I went and got my copy of the results (which came back just before I went to Germany for six weeks) and took that copy to my brother's doctor in Germany.

This doctor took a look at those levels, and immediately exclaimed, "Wow, those are dangerously low levels, something needs to be done immediately!" And I had a prescription for Fludrocortisone within a minute (quite the contrast, eh?). He didn't prescribe hydrocortisone, because I had already gotten it from an Internet source and was taking it before I got to him. Otherwise he would have prescribed that also.

Before I started taking those meds my blood pressure was falling by the day. It had gone down to 90 over 55 by the time I got to him. Within two weeks of taking the medicines it was back up to normal (around 120 over 80), and have been normal ever since.

I was also feeling like I wasn't going to live much longer (which was likely true) at the rate I was deteriorating. Now I am doing much better. Not great, but tolerably well.

I hope you figure it out and feel better soon. If you need more info (on dosing and other stuff) send me a PM, and I will give you my phone number, you can call me any time.

happygirl Collaborator
happygirl
Posted

UM: I think what K is saying is that there is no cell change, AND cell change would indicate type 2. I think she put in the modifier because most of us wouldn't know what no cell change really meant.

Karen, I am glad to hear your update. I am sorry that you are going through so much. And like MG said, we definitely miss you on here.

I sincerely hope that they find answers to your situation. Please keep us updated and don't retreat.

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

Celiac.com Sponsor (A8-M):


Judyin Philly Enthusiast
Judyin Philly
Posted

:o IT'S KAREN...I'M SO GLAD TO GET AN UPDATE.

DON'T COME ON LINE MUCH BUT THINK OF YOU OFTEN.

THANKS FOR LETTING US KNOW YOUR LATEST INFO

PLEASE DON'T BE A STRANGER..WE MISS YOU HERE.

JUDY

Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted

Glad to see you! I've been thinking of you...

Sounds like you are on the right track, and Ursa is an excellent source of knowledge and advice.

I also thought that salt cravings had something to do with low thyroid? Then again, low thyroid could be caused by Addison's. couldn't it?

I hope you feel better VERY soon (like, NOW), and please keep us posted!!!

aikiducky Apprentice
aikiducky
Posted

Karen, thanks for the update! I had wondered how you were doing.

Pauliina

Phyllis28 Apprentice
Phyllis28
Posted

Karen,

Hope you feel better soon.

loraleena Contributor
loraleena
Posted

Can you take something natural for your adrenals? I use a product called Isocort.

  • 3 weeks later...
Canadian Karen Community Regular
Canadian Karen
Posted
  • Author

Okay, just got off the phone with doctor's secretary:

Cortisol - 264

ACTH - 3.1

She said there was no problem with those numbers. I was SOOOOO sure we were onto something here! :angry:

Ursa Major Collaborator
Ursa Major
Posted

Only one cortisol number? When was it taken? One is way too little and doesn't prove much one way or another.

And what about the aldosterone? Low aldosterone causes low blood pressure. He should have tested for that!

These numbers just prove that your doctor is ignorant when it comes to adrenal fatigue. Ask to be referred to an endocrinologist. Or order the kit for saliva testing online, it is way more accurate.

Green12 Enthusiast
Green12
Posted

Karen,

I have often thought about you, wondering how you were doing.

I assume from your original post it meant that more damage had not set in according to the biopsy? That is really great news!!

I hope that you will hang in there and keep searching for the answers, and there is always support to be found on this board in those dark down times :)

L.A. Contributor
L.A.
Posted

Ugh. Hope things turn around soon. Rooting for you from downtown Brooklin! L.A.

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. Wheatwacked
      - Wheatwacked replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      50

      Supplements for those Diagnosed with Celiac Disease

      Raising you vitamin D will increase absorption of calcium automatically without supplementation of calcium. A high PTH can be caused by low D causing poor calcium absorption; not insuffient calcium intake. With low D your body is not absorbing calcium from your food so it steals it from your bones. Heart has priority over bone. I've been taking 1...
    2. knitty kitty
      - knitty kitty replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      results from 13 day gluten challenge - does this mean I can't have celiac?

      @catnapt, Wheat germ has very little gluten in it. Gluten is the carbohydrate storage protein, what the flour is made from, the fluffy part. Just like with beans, there's the baby plant that will germinate ("germ"-inate) if sprouted, and the bean part is the carbohydrate storage protein. Wheat germ is the baby plant inside a kernel of wheat...
    3. knitty kitty
      - knitty kitty replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      50

      Supplements for those Diagnosed with Celiac Disease

      Hello, @asaT, I'm curious to know whether you are taking other B vitamins like Thiamine B1 and Niacin B3. Malabsorption in Celiac disease affects all the water soluble B vitamins and Vitamin C. Thiamine and Niacin are required to produce energy for all the homocysteine lowering reactions provided by Folate, Cobalamine and Pyridoxine. Weight...
    4. Florence Lillian
      - Florence Lillian replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      11

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Hi Jane: You may want to try the D3 I now take. I have reactions to fillers and many additives. Sports Research, it is based in the USA and I have had no bad reactions with this brand. The D3 does have coconut oil but it is non GMO, it is Gluten free, Soy free, Soybean free and Safflower oil free. I have a cupboard full of supplements that did not agree...
    5. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      results from 13 day gluten challenge - does this mean I can't have celiac?

      highly unlikely NOTHING and I mean NOTHING else has ever caused me these kinds of symptoms I have no problem with dates, they are a large part of my diet In fact, I eat a very high fiber, very high vegetable and bean diet and have for many years now. It's considered a whole foods plant based or plant forward diet (I do now eat some lean...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,355
    • Most Online (within 30 mins)
      7,748
    Amy Immerman
    Newest Member
    Amy Immerman
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • Wheatwacked
      Supplements for those Diagnosed with Celiac Disease

      By Wheatwacked · Posted

      Raising you vitamin D will increase absorption of calcium automatically without supplementation of calcium.  A high PTH can be caused by low D causing poor calcium absorption; not insuffient calcium intake.  With low D your body is not absorbing calcium from your food so it steals it from your bones.  Heart has priority over bone. I've been taking 10,000 IU D3 a day since 2015.  My doctor says to continue. To fix my lactose intolerance, lots of lactobacillus from yogurts, and brine fermented pickles and saurkraut and olives.  We lose much of our ability to make lactase endogenosly with maturity but a healthy colony of lactobacillus in our gut excretes lactase in exchange for room and board. The milk protein in grass fed milk does not bother me. It tastes like the milk I grew up on.  If I drink commercial milk I get heartburn at night. Some experts estimate that 90% of us do not eat Adequite Intake of choline.  Beef and eggs are the principle source. Iodine deficiency is a growing concern.  I take 600 mcg a day of Liquid Iodine.  It and NAC have accelerated my healing all over.  Virtually blind in my right eye after starting antihypertensive medication and vision is slowly coming back.  I had to cut out starches because they drove my glucose up into the 200+ range.  I replaced them with Red Bull for the glucose intake with the vitamins, minerals and Taurine needed to process through the mitochodria Krebs Cycle to create ATP.  Went from A1c 13 down to 7.9.  Work in progress. Also take B1,B2,B3,B5,B6. Liquid Iodine, Phosphatidyl Choline, Q10, Selenium, D and DHEA.     Choline supplemented as phosphatidylcholine decreases fasting and postmethionine-loading plasma homocysteine concentrations in healthy men +    
    • knitty kitty
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By knitty kitty · Posted

      @catnapt, Wheat germ has very little gluten in it.  Gluten is  the carbohydrate storage protein, what the flour is made from, the fluffy part.  Just like with beans, there's the baby plant that will germinate  ("germ"-inate) if sprouted, and the bean part is the carbohydrate storage protein.   Wheat germ is the baby plant inside a kernel of wheat, and bran is the protective covering of the kernel.   Little to no gluten there.   Large amounts of lectins are in wheat germ and can cause digestive upsets, but not enough Gluten to provoke antibody production in the small intestines. Luckily you still have time to do a proper gluten challenge (10 grams of gluten per day for a minimum of two weeks) before your next appointment when you can be retested.    
    • knitty kitty
      Supplements for those Diagnosed with Celiac Disease

      By knitty kitty · Posted

      Hello, @asaT, I'm curious to know whether you are taking other B vitamins like Thiamine B1 and Niacin B3.  Malabsorption in Celiac disease affects all the water soluble B vitamins and Vitamin C.  Thiamine and Niacin are required to produce energy for all the homocysteine lowering reactions provided by Folate, Cobalamine and Pyridoxine.   Weight gain with a voracious appetite is something I experienced while malnourished.  It's symptomatic of Thiamine B1 deficiency.   Conversely, some people with thiamine deficiency lose their appetite altogether, and suffer from anorexia.  At different periods on my lifelong journey, I suffered this, too.   When the body doesn't have sufficient thiamine to turn food, especially carbohydrates, into energy (for growth and repair), the body rations what little thiamine it has available, and turns the carbs into fat, and stores it mostly in the abdomen.  Consuming a high carbohydrate diet requires additional thiamine to process the carbs into energy.  Simple carbohydrates (sugar, white rice, etc.) don't contain thiamine, so the body easily depletes its stores of Thiamine processing the carbs into fat.  The digestive system communicates with the brain to keep eating in order to consume more thiamine and other nutrients it's not absorbing.   One can have a subclinical thiamine insufficiency for years.  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so the symptoms can wax and wane mysteriously.  Symptoms of Thiamine insufficiency include stunted growth, chronic fatigue, and Gastrointestinal Beriberi (diarrhea, abdominal pain), heart attack, Alzheimer's, stroke, and cancer.   Thiamine improves bone turnover.  Thiamine insufficiency can also affect the thyroid.  The thyroid is important in bone metabolism.  The thyroid also influences hormones, like estrogen and progesterone, and menopause.  Vitamin D, at optimal levels, can act as a hormone and can influence the thyroid, as well as being important to bone health, and regulating the immune system.  Vitamin A is important to bone health, too, and is necessary for intestinal health, as well.   I don't do dairy because I react to Casein, the protein in dairy that resembles gluten and causes a reaction the same as if I'd been exposed to gluten, including high tTg IgA.  I found adding mineral water containing calcium and other minerals helpful in increasing my calcium intake.   Malabsorption of Celiac affects all the vitamins and minerals.  I do hope you'll talk to your doctor and dietician about supplementing all eight B vitamins and the four fat soluble vitamins because they all work together interconnectedly.  
    • Florence Lillian
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Florence Lillian · Posted

      Hi Jane: You may want to try the D3 I now take. I have reactions to fillers and many additives. Sports Research, it is based in the USA and I have had no bad reactions with this brand. The D3 does have coconut oil but it is non GMO, it is Gluten free, Soy free, Soybean free and Safflower oil free.  I have a cupboard full of supplements that did not agree with me -  I just keep trying and have finally settled on Sports Research. I take NAKA Women's Multi full spectrum, and have not felt sick after taking 2 capsules per day -  it is a Canadian company. I buy both from Amazon. I wish you well in your searching, I know how discouraging it all is. Florence.  
    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      highly unlikely  NOTHING and I mean NOTHING else has ever caused me these kinds of symptoms I have no problem with dates, they are a large part of my diet In fact, I eat a very high fiber, very high vegetable and bean diet and have for many years now. It's considered a whole foods plant based or plant forward diet (I do now eat some lean ground turkey but not much) I was off dairy for years but recently had to add back plain yogurt to meet calcium needs that I am not allowed to get from supplements (I have not had any problem with the yogurt)   I eat almost no processed foods. I don't eat out. almost everything I eat, I cook myself I am going to keep a food diary but to be honest, I already know that it's wheat products and also barley that are the problem, which is why I gradually stopped eating and buying them. When I was eating them, like back in early 2024, when I was in the middle of moving and ate out (always had bread or toast or rolls or a sub or pizza) I felt terrible but at that time was so busy and exhausted that I never stopped to think it was the food. Once I was in my new place, I continued to have bread from time to time and had such horrible joint pain that I was preparing for 2 total knee replacements as well as one hip! The surgery could not go forward as I was (and still am) actively losing calcium from my bones. That problem has yet to be properly diagnosed and treated   anyway over time I realized that I felt better when I stopped eating bread. Back at least 3 yrs ago I noticed that regular pasta made me sick so I switched to brown rice pasta and even though it costs a lot more, I really like it.   so gradually I just stopped buying and eating foods with gluten. I stopped getting raisin bran when I was constipated because it made me bloated and it didn't help the constipation any more (used to be a sure bet that it would in the past)   I made cookies and brownies using beans and rolled oats and dates and tahini and I LOVE them and have zero issues eating those I eat 1 or more cans of beans per day easily can eat a pound of broccoli - no problem! Brussels sprouts the same thing.   so yeh it's bread and related foods that are clearly the problem  there is zero doubt in my mind    
×
×
  • 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.