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

Recommended Posts

PeaceAngel22 Apprentice

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
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

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

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
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

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

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

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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,742
    • Most Online (within 30 mins)
      7,748

    MistyMoon
    Newest Member
    MistyMoon
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)

    • There are no registered users currently online

  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Theresa2407
      Maybe you have a low  intolerance to Wheat.   Rye, Barley and Malt are the gluten in Celiac disease.  It has always been stated Wheat and Gluten, not just a Wheat intolerance.  Barley will keep me in bed for (2) weeks.  Gut, Migrains, Brain fog, Diahrea.  It is miserable.  And when I was a toddler the doctor would give me a malt medicine because I always had Anemia and did not grow.  Boy was he off.  But at that time the US didn't know anyone about Celiac.  This was the 1940s and 50s.  I had my first episode at 9 months and did not get a diagnosis until I was 50.  My immune system was so shot before being diagnoised, so now I live with the consequences of it. I was so upset when Manufacturers didn't want to label their products so they added barley to the product.  It was mostly the cereal industry.  3 of my favorite cereals were excluded because of this. Malt gives me a bad Gut reaction.
    • Gigi2025
      Thanks much Scott.  Well said, and heeded.   I don't have Celiac, which is fortunate.
    • Scott Adams
      Do you have the results of your endoscopy? Did you do a celiac disease blood panel before that?  Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:    
    • Scott Adams
      It is odd that your Tissue Transglutaminase (TTG) IgA level has bounced from the "inconclusive" range (7.9, 9.8) down to a negative level (5.3), only to climb back up near the positive threshold. This inconsistency, coupled with your ongoing symptoms of malabsorption and specific nutrient deficiencies, is a strong clinical indicator that warrants a more thorough investigation than a simple "satisfactory" sign-off. A negative blood test does not definitively rule out celiac disease, especially with such variable numbers and a classic symptomatic picture. You are absolutely right to seek a second opinion and push for a referral to a gastroenterologist. A biopsy remains the gold standard for a reason, and advocating for one is the most direct path to getting the answers you need to finally address the root cause of your suffering. Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:    
    • Scott Adams
      There is a distinction between gluten itself and the other chemicals and processing methods involved in modern food production. Your experience in Italy and Greece, contrasted with your reactions in the U.S., provides powerful anecdotal evidence that the problem, for some people, may not be the wheat, but the additives like potassium bromate and the industrial processing it undergoes here. The point about bromines displacing iodine and disrupting thyroid function is a significant one, explaining a potential biological mechanism for why such additives could cause systemic health issues that mimic gluten sensitivity. It's both alarming and insightful to consider that the very "watchdog" agencies meant to protect us are allowing practices banned in many other developed countries. Seeking out European flour and your caution about the high-carb, potentially diabeticgenic nature of many gluten-free products are excellent practical takeaways from your research, but I just want to mention--if you have celiac disease you need to avoid all wheat, including all wheat and gluten in Europe.
×
×
  • 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.