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

No Idea What's Going On Anymore

Chrisser

By Chrisser
in Coping with Celiac Disease

Recommended Posts

Chrisser Explorer
Chrisser
Posted

OK, my body has gone absolutely haywire since going gluten-free. Things sort of leveled out for a little bit after several weeks of being on the diet. I was still kind of tired and constantly eating, but at least I was getting into somewhat of a regime and my blood sugar levels had leveled out a bit. But all of a sudden, the last few weeks, I'm a mess. My blood sugar will not get high enough. Yesterday I ate 10 meals. 10 MEALS. I was eating like every hour and a half. And after every meal my blood sugar would drop into the 70s. Late last night it dropped into the 60s. The last week or two my blood sugar hasn't gone above the 80s after a meal. And obviously with low blood sugar comes low energy levels. I've been keeping a food diary. It's like eating doesn't really make a difference. I hate it now. I hate food. I'm so tired of eating. I'm held captive by food. I had to come back to NY to live with my mother so I could try to get back on my feet and get this all figured out. I had seem my PCP and endocrinologist in Dallas, and no one had any answers. Everyone keeps telling me my blood sugar levels are normal. This is ridiculous. I saw an internal medicine dr here in NY, and I'm waiting on the bloodwork results from her, but I have to wait until the 23rd to see an endo to get anything more extensive done.

Several weeks ago I had not slept for 4 days straight, I had a horrible throat infection, and I ended up in the ER getting fluids and pain medication and antibiotics for my throat. It seems like after that everything went haywire. But it just keeps getting worse, and I don't know why. It's turned into a vicious circle...the more stressed out I get, the worse it gets...the worse it gets, the more stressed out I get. I've been practically living on Xanax, which I normally don't take.

Ugh. Anyone have any similar experiences?? Or any clues as to what in the world may be going on??

I"m so tired of fighting this.

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

Celiac.com Sponsor (A8-M):


CarlaB Enthusiast
CarlaB
Posted
It's turned into a vicious circle...the more stressed out I get, the worse it gets...the worse it gets, the more stressed out I get. I've been practically living on Xanax, which I normally don't take.

This stood out to me because I suffer adrenal fatigue. Blood sugar is tied to adrenals, so it could be part of your problem. Google it and see.

Shalia Apprentice
Shalia
Posted

I'd suggest seeing your endo about adrenal failure. I have a good friend who also couldn't get her blood sugar at anywhere near a decent level for quite a while until she got her adrenals taken care of.

It sucks, because now she needs to be prepped with more shots, but it'll save her life. The last thing you'd want is to find out you actually have adrenal failure when you need them to work.

Good luck to you.

CarlaB Enthusiast
CarlaB
Posted

Remember, when they check your adrenals, you may not necessarily be all the way to failure, and if you're not, then their tests won't show a problem. It would be like catching celiac before it actually damages your intestine. Most docs won't diagnose adrenal fatigue in much the same way that they don't diagnose celiac until your intestines are damaged.

jesscarmel Enthusiast
jesscarmel
Posted
OK, my body has gone absolutely haywire since going gluten-free. Things sort of leveled out for a little bit after several weeks of being on the diet. I was still kind of tired and constantly eating, but at least I was getting into somewhat of a regime and my blood sugar levels had leveled out a bit. But all of a sudden, the last few weeks, I'm a mess. My blood sugar will not get high enough. Yesterday I ate 10 meals. 10 MEALS. I was eating like every hour and a half. And after every meal my blood sugar would drop into the 70s. Late last night it dropped into the 60s. The last week or two my blood sugar hasn't gone above the 80s after a meal. And obviously with low blood sugar comes low energy levels. I've been keeping a food diary. It's like eating doesn't really make a difference. I hate it now. I hate food. I'm so tired of eating. I'm held captive by food. I had to come back to NY to live with my mother so I could try to get back on my feet and get this all figured out. I had seem my PCP and endocrinologist in Dallas, and no one had any answers. Everyone keeps telling me my blood sugar levels are normal. This is ridiculous. I saw an internal medicine dr here in NY, and I'm waiting on the bloodwork results from her, but I have to wait until the 23rd to see an endo to get anything more extensive done.

Several weeks ago I had not slept for 4 days straight, I had a horrible throat infection, and I ended up in the ER getting fluids and pain medication and antibiotics for my throat. It seems like after that everything went haywire. But it just keeps getting worse, and I don't know why. It's turned into a vicious circle...the more stressed out I get, the worse it gets...the worse it gets, the more stressed out I get. I've been practically living on Xanax, which I normally don't take.

Ugh. Anyone have any similar experiences?? Or any clues as to what in the world may be going on??

I"m so tired of fighting this.

I'm sorry i have no good advice or insight into whats happening to you but i really hope you feel better soon. i will keep you in my thoughts. its so awful to feel so sick and not know whats causing it. i really hope you feel good soon!!!

Jess

oceangirl Collaborator
oceangirl
Posted
I'm sorry i have no good advice or insight into whats happening to you but i really hope you feel better soon. i will keep you in my thoughts. its so awful to feel so sick and not know whats causing it. i really hope you feel good soon!!!

Jess

I would like to echo what Jess said. I have to say, after doing much better for awhile, I have not been doing very well since a nasty throat infection for which I did 3 ROUNDS of antibiotics in August and which has recurred 4 times! I hope you get to the bottom of this and start to feel better soon!

lisa

kbtoyssni Contributor
kbtoyssni
Posted

I don't have any suggestions for you, but I hope you find out the root of your problem and start feeling better soon.

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

Celiac.com Sponsor (A8-M):


daffadilly Apprentice
daffadilly
Posted

Are you eating dairy? soy? eggs? corn? Those are the other common problems.

Chrisser Explorer
Chrisser
Posted
  • Author
Are you eating dairy? soy? eggs? corn? Those are the other common problems.

I haven't been eating corn. I have soy in whatever products it may be in. But I don't see how any of those would contribute to low blood sugars, especially if I'm eating 6-8 meals a day.

ilovechocolate Explorer
ilovechocolate
Posted

my thoughts and prayers are with you, i'm so sorry that you arent finding any answers.

HANG IN THERE!!! hey it finally got cooler here in dallas! we are in the low 70's! its a total miracle:) let me know if i can do anything for ya :rolleyes:

emily

lindalee Enthusiast
lindalee
Posted

Chrisser, when I first went on the diet , some things got worse and I think it had a lot to do with getting rid of toxins and fungus. I had a lot of sinus issues (used sinus cleanser and cleared that up so it didn't get to the throat).

I ate all the time also. I think that had to do with malabsorption.

Never checked the sugar levels but I do know it took a while for my energy levels to go up. I figured I had been eating the gluten so long it would just take a while and needed rest and a healing diet.

Sleep was also a problem and I started melatonin so I could sleep (body cannot heal without sleep).

I had been on antibotics previously for a dental issue which I believe put me in a disbiosis state in the gut. I started eating lots more yogurt (per SCD) to kill the bad bacteria. This is a long process and any sugar,etc. can contribute to these nasty bacterias.

All the best to you and hope you get some answers and let us know. :)

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
      133,356
    • Most Online (within 30 mins)
      7,748
    JAGAPG
    Newest Member
    JAGAPG
    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

    • 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.