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

Feeling Weak, I Can't Take This Anymore

PeaceAngel22

By PeaceAngel22
in Coping with Celiac Disease

Recommended Posts

PeaceAngel22 Apprentice
PeaceAngel22
Posted

Just an update. Of course my celiac panel came back negative since I have been gluten free for three months. The doc suspected it would be negative. Anyway, I just feel so weak to the point where I am going to pass out. I stopped my vitamins for a while thinking that they were not helping but started back on them yesterday. I just feel like walking death. Of course no one is believing it because I look the picture of health on the outside. I have lost 28 pounds in a year and a half, my blood pressure has dropped, my D stopped in November when I went gluten free, but I still feel so weak. I think I am dying all the time. I need to go to my regular doctor again but I know he will just look at me like he has no idea what to do with me. My GI wants to do a colonoscopy, but I really feel my body will not tolerate it at this point. I have already seen an arthritis doctor, my gyno, my regular doctor, and now the GI. Do I go to an internist next? Any advice would be great!!

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted
Just an update. Of course my celiac panel came back negative since I have been gluten free for three months. The doc suspected it would be negative. Anyway, I just feel so weak to the point where I am going to pass out. I stopped my vitamins for a while thinking that they were not helping but started back on them yesterday. I just feel like walking death. Of course no one is believing it because I look the picture of health on the outside. I have lost 28 pounds in a year and a half, my blood pressure has dropped, my D stopped in November when I went gluten free, but I still feel so weak. I think I am dying all the time. I need to go to my regular doctor again but I know he will just look at me like he has no idea what to do with me. My GI wants to do a colonoscopy, but I really feel my body will not tolerate it at this point. I have already seen an arthritis doctor, my gyno, my regular doctor, and now the GI. Do I go to an internist next? Any advice would be great!!

I am sorry you are having such a hard time. Make sure those vitamins and any meds that you take are gluten-free. You could, if you are not already, add some sublingual B12. Have you had a blood check on your vitamin and mineral levels? If you haven't healed yet you may not be absorbing them like you should. Make sure in particular that your folate, iron and B12 levels are not in the low ranges, ask to see them yourself. Some folks will be affected by a drop even if the levels are not technically extrememly low. B12 is a good example of that. I know others will be posting with some good advice also. Oh and another thing you want to have your doctor look for is diabetes, it is common in celiacs but doctors don't always check for it.

I hope you feel better soon.

bluejeangirl Contributor
bluejeangirl
Posted

If you lost that much weight I suppose this could be why your weak. Are there other foods you could be reacting to? If you were eating wheat for breakfast, lunch and dinner and stopped eating it there's that big void and it takes awhile to come up with alternatives. Also it might feel like your full when your probably not just because your stomach has strunk. Your body needs a certain amount of calories to function and when you go below that it starts to really rebel.

If you are eating the required calories and are still losing weight then it could be diabetes. You would be feeling very weak and tired with that.

Until I know more that's all I can go on.

Gail

Yenni Enthusiast
Yenni
Posted

I felt like you do. I didn't loose weight though. But I felt I almost didn't have the energy to live. It was freaky. I thought I was gonna die.

Have you thought about getting tests done at EnteroLab? www.enterolab.com

You can do that even being gluten free and it is very easy. Don't need a doctor to do it either. Maybe you'll get some answers through them.

I was gluten free when I had my blood tests done too and they came back negative. I then got tests done at EnteroLab and they were possitive. My dietary respons is possitive too, so now my regular doctors office accepted the EnteroLab results.

chatycady Explorer
chatycady
Posted
Just an update. Of course my celiac panel came back negative since I have been gluten free for three months. The doc suspected it would be negative. Anyway, I just feel so weak to the point where I am going to pass out. I stopped my vitamins for a while thinking that they were not helping but started back on them yesterday. I just feel like walking death. Of course no one is believing it because I look the picture of health on the outside. I have lost 28 pounds in a year and a half, my blood pressure has dropped, my D stopped in November when I went gluten free, but I still feel so weak. I think I am dying all the time. I need to go to my regular doctor again but I know he will just look at me like he has no idea what to do with me. My GI wants to do a colonoscopy, but I really feel my body will not tolerate it at this point. I have already seen an arthritis doctor, my gyno, my regular doctor, and now the GI. Do I go to an internist next? Any advice would be great!!

What about anemia? Iron? or B-12? Pernicious anemia?

kbtoyssni Contributor
kbtoyssni
Posted

What about something like chemical sensitivity, mold sensitivity or electrical sensitivity? When I get glutened, the smell of chemicals or anything strong makes me feel very sick. I've switched to natural-type cleaners. I've also switched my dimmer switches to regular ones and moved as many electronics out of my bedroom. I haven't notice a big difference, but I figure every little bit helps.

lorka150 Collaborator
lorka150
Posted

I definitely would recommend an internist - out of every doc I went to, he by FAR knew the most and is now my doctor I see almost exclusively.

Like you, I dropped a lot of weight, my lowest at 78lbs. I am near 5'8''. I could no longer walk, I had to move out of my apt because there were 15 steps, and I was using a cane to get around.

Also, you might want to check your diet - are you eating enough fats, proteins, and carbohydrates? The balance is imperative, also.

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

Celiac.com Sponsor (A8-M):


flowergirl Rookie
flowergirl
Posted

Have you investigated the deficiencies commonly found due to malabsorbtion? I had iron deficiency anemia all my life and never quite understood why I was constantly without energy and feeling like a dead leaf. Iron with folic acid tabs helps as well as the occational Vit B12 supplement. Fatty acids like cold pressed, extra virgin flaxseed and coconut oil also helps my metabolism pick up within hours.

You may want to ask your doctor to run some blood tests on the common deficiencies found in celiacs. See this helpful website: Open Original Shared Link

All the best, Flowergirl

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. Kimmy88
      - Kimmy88 commented on Scott Adams's article in Winter 2026 Issue
      8

      Can You Really Trust Gluten-Free Menus? What Every Celiac Needs to Know Before Eating Out

      Thanks this is helpful!
    2. xxnonamexx
      - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Fermented foods, Kefir, Kombucha?

      very interesting thanks for the info
    3. Florence Lillian
      - Florence Lillian replied to lmemsm's topic in Gluten-Free Recipes & Cooking Tips
      13

      gluten free cookie recipes

      More cookie recipes ...thanks so much for the heads-up Scott. One can never have too many. Cheers, Florence.
    4. Russ H
      - Russ H replied to Charlie1946's topic in Related Issues & Disorders
      15

      Severe severe mouth pain

      Hi Charlie, You sound like you have been having a rough time of it. Coeliac disease can cause a multitude of skin, mouth and throat problems. Mouth ulcers and enamel defects are well known but other oral conditions are also more common in people with coeliac disease: burning tongue, inflamed and swollen tongue, difficulty swallowing, redness and crusting...
    5. cristiana
      - cristiana replied to Charlie1946's topic in Related Issues & Disorders
      15

      Severe severe mouth pain

      Hi @Charlie1946 You are very welcome. I agree wholeheartedly with @knitty kitty: "I wish doctors would check for nutritional deficiencies and gastrointestinal issues before prescribing antidepressants." I had a type of tingling/sometimes pain in my cheek about 2 years after my diagnosis. I noticed it after standing in cold wind, affecting...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,915
    • Most Online (within 30 mins)
      7,748
    DRIZZE
    Newest Member
    DRIZZE
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • xxnonamexx
      Fermented foods, Kefir, Kombucha?

      By xxnonamexx · Posted

      very interesting thanks for the info  
    • Florence Lillian
      gluten free cookie recipes

      By Florence Lillian · Posted

      More cookie recipes ...thanks so much for the heads-up Scott.  One can never have too many.  Cheers, Florence.
    • Russ H
      Severe severe mouth pain

      By Russ H · Posted

      Hi Charlie, You sound like you have been having a rough time of it. Coeliac disease can cause a multitude of skin, mouth and throat problems. Mouth ulcers and enamel defects are well known but other oral conditions are also more common in people with coeliac disease: burning tongue, inflamed and swollen tongue, difficulty swallowing, redness and crusting in the mouth corners, and dry mouth to name but some. The link below is for paediatric dentistry but it applies to adults too.  Have you had follow up for you coeliac disease to check that your anti-tTG2 antibodies levels have come down? Are you certain that you not being exposed to significant amounts of gluten? Are you taking a PPI for your Barrett's oesophagus? Signs of changes to the tongue can be caused by nutritional deficiencies, particularly iron, B12 and B9 (folate) deficiency. I would make sure to take a good quality multivitamin every day and make sure to take it with vitamin C containing food - orange juice, broccoli, cabbage etc.  Sebaceous hyperplasia is common in older men and I can't find a link to coeliac disease.   Russ.   Oral Manifestations in Pediatric Patients with Coeliac Disease – A Review Article
    • cristiana
      Severe severe mouth pain

      By cristiana · Posted

      Hi @Charlie1946 You are very welcome.   I agree wholeheartedly with @knitty kitty:  "I wish doctors would check for nutritional deficiencies and gastrointestinal issues before prescribing antidepressants." I had a type of tingling/sometimes pain in my cheek about 2 years after my diagnosis.  I noticed it after standing in cold wind, affecting  me after the event - for example, the evening after standing outside, I would feel either tingling or stabbing pain in my cheek.   I found using a neck roll seemed to help, reducing caffeine, making sure I was well-hydrated, taking B12 and C vitamins and magnesium.  Then when the lockdowns came and I was using a facemask I realised that this pain was almost entirely eliminated by keeping the wind off my face.  I think looking back I was suffering from a type of nerve pain/damage.  At the time read that coeliacs can suffer from nerve damage caused by nutritional deficiencies and inflammation, and there was hope that as bodywide healing took place, following the adoption of a strict gluten free diet and addressing nutritional deficiencies, recovery was possible.   During this time, I used to spend a lot of time outdoors with my then young children, who would be playing in the park, and I'd be sheltering my face with an upturned coat collar, trying to stay our of the cold wind!  It was during this time a number of people with a condition called Trigeminal Neuralgia came up to me and introduced themselves, which looking back was nothing short of miraculous as I live in a pretty sparsely populated rural community and it is quite a rare condition.   I met a number of non-coeliacs who had suffered with this issue  and all bar one found relief in taking medication like amitriptyline which are type of tricyclic anti-depressant.   They were not depressed, here their doctors had prescribed the drugs as pain killers to address nerve pain, hence I mention here.  Nerve pain caused by shingles is often treated with this type of medication in the UK too, so it is definitely worth bearing in mind if standard pain killers like aspirin aren't working. PS  How to make a neck roll with a towel: https://www.painreliefwellness.com.au/2017/10/18/cervical-neck-roll/#:~:text=1.,Very simple. 
    • Scott Adams
      gluten free cookie recipes

      By Scott Adams · Posted

      We just added a ton of new recipes here: https://www.celiac.com/celiac-disease/gluten-free-recipes/gluten-free-dessert-recipes-pastries-cakes-cookies-etc/gluten-free-cookie-recipes/
×
×
  • 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.