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Feeling Weak, I Can't Take This Anymore


PeaceAngel22

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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!!


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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.


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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

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    • trents
      If you have been eating the gluten equivalent of 4-6 slices of wheat bread daily for say, 4 weeks, I think a repeat blood test would be valid.
    • englishbunny
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    • trents
      Welcome to the forum, @englishbunny! Did your celiac panel include a test for "Total IGA"? That is a test for IGA deficiency. If you are IGA deficient, other IGA test resultls will likely be falsely low. Were you by any chance already practicing a reduced gluten free diet when the blood draw was done?
    • englishbunny
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    • trents
      Okay, Lori, we can agree on the term "gluten-like". My concern here is that you and other celiacs who do experience celiac reactions to other grains besides wheat, barley and rye are trying to make this normative for the whole celiac community when it isn't. And using the term "gluten" to refer to these other grain proteins is going to be confusing to new celiacs trying to figure out what grains they actually do need to avoid and which they don't. Your experience is not normative so please don't proselytize as if it were.
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