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confusedks

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confusedks Enthusiast
confusedks
Posted

Some of you may have been following my posts. We are in the process of getting tests for Celiac. I did get enterolab reults which said I have the gene and everything on the celiac panel came back positive...not extreme but enough that it said to go gluten-free. I have already been gluten-free for about 5 weeks. I have had severe anemia in the not too far past, and had iron iv's. I don't know if I am getting glutened or i am anemic again. What are some places that I might be getting glutened without knowing. I have checked my shampoo, etc. and it's all gluten-free, except my deodorant. Does anyone have suggestions for the extreme EXHAUSTION?? and does this get better? I am so tired I dont know what to do. I can't make it through a day and I am really crabby (i'm usually not.) Also, my stomach has been getting so bloated, my mom joked that I look at least 5 months pregnant. my usually 27 inch stomach is getting up to 33 INCHES!!!!!!!!!!!!!! Thats HUGE!!!! I am a tiny person so i look really pregnant. Does anyone have any hope? Thanks! :(

Kassandra

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gdobson Explorer
gdobson
Posted

I don't know, Kassandra. There are so many ways things can sneak into your system...toaster, oven racks, I've heard dishwasher and dishtowel. Is your house gluten free? I find that's the safest way. How about eating out?

My son kept reacting to something we couldn't figure out and had to return to the old food diary method. It turned out he was having a reaction to certain red food dyes

loraleena Contributor
loraleena
Posted

Have you checked all your toiletries? Did you get new toaster, kitchen utensils, pots and pans? Also a lot of people need to eliminate dairy as well for a while. I would recomend getting a good gluten free digestive enzyme to take with food to help you digest things. It can take a long time to see results and you may have withdrawal in the beginning, so hang in there.

aikiducky Apprentice
aikiducky
Posted

You should certainly also check that your not anemic again. This soon into the diet your probably not absorbing nutrients very well yet so it wouldn't be that surprising. And do you take a vitamin B supplement? That can also help with exhaustion. The bloating could be some other food besides gluten as well, it might be that there is something else you also don't digest very well (like dairy) but you didn't notice before because the gluten was masking other reactions.

Pauliina

confusedks Enthusiast
confusedks
Posted
  • Author
You should certainly also check that your not anemic again. This soon into the diet your probably not absorbing nutrients very well yet so it wouldn't be that surprising. And do you take a vitamin B supplement? That can also help with exhaustion. The bloating could be some other food besides gluten as well, it might be that there is something else you also don't digest very well (like dairy) but you didn't notice before because the gluten was masking other reactions.

Pauliina

I used to take b12 but it never did anything. I also have a lot of brain fog so I can never seem to remember to take anything. I am dairy free 100 percent!! I will start a food diary. How long do people keep logging the info? Thanks.

confusedks Enthusiast
confusedks
Posted
  • Author
You should certainly also check that your not anemic again. This soon into the diet your probably not absorbing nutrients very well yet so it wouldn't be that surprising. And do you take a vitamin B supplement? That can also help with exhaustion. The bloating could be some other food besides gluten as well, it might be that there is something else you also don't digest very well (like dairy) but you didn't notice before because the gluten was masking other reactions.

Pauliina

I used to take b12 but it never did anything. I also have a lot of brain fog so I can never seem to remember to take anything. I am dairy free 100 percent!! I will start a food diary. How long do people keep logging the info? Thanks.

confusedks Enthusiast
confusedks
Posted
  • Author
You should certainly also check that your not anemic again. This soon into the diet your probably not absorbing nutrients very well yet so it wouldn't be that surprising. And do you take a vitamin B supplement? That can also help with exhaustion. The bloating could be some other food besides gluten as well, it might be that there is something else you also don't digest very well (like dairy) but you didn't notice before because the gluten was masking other reactions.

Pauliina

I used to take b12 but it never did anything. I also have a lot of brain fog so I can never seem to remember to take anything. I am dairy free 100 percent!! I will start a food diary. How long do people keep logging the info? Thanks.

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aikiducky Apprentice
aikiducky
Posted

Did you take the B12 in a pill? If your intestine isn't absorbing properly it might be that you didn't absorb the vitamin. Some people take shots, or let the vitamin dissolve under the tongue - it gets straight into the blood stream.

What more can I think about...you might also be deficient in other nutrients I guess, is it possible to get tested for vitamin levels more broadly?

I hope others will have more ideas. :)

Pauliina

Nancym Enthusiast
Nancym
Posted

Pet food with wheat? Bird food containing wheat?

It could be something completely unrelated. Lots of autoimmune diseases have brain fog and fatigue as symptoms. Perhaps you should talk to your doctor?

jerseyangel Proficient
jerseyangel
Posted

I was severly anemic at the time of my diagnosis. At that time,I had a hemiglobin of just 8. It took about 4 months before the extreme exhaustion started to go away. It took 6 months for my anemia to subside (hemiglobin of 14.6)

Quite possibly, you need to give it a little more time. At 5 weeks, I was still tired, lethargic and bloated.

It sounds like you are successfully gluten-free, and I was going to mention dairy free for now, but saw that you already are.

Have you noticed any positive changes at all?

confusedks Enthusiast
confusedks
Posted
  • Author

Thank you for your responses. We are in the middle of getting new insurance so I will hopefully be able to get to my hematologist about the anemia. I have been anemic for over a year and it is impossible to get rid of!! I think that is part of what is causing the exhaustion, but I can't tolerate the oral iron so we resorted to IV's, but they cost a fortune. My ferritin went from literally nothing to over normal, back down to really low, in about 4 weeks. My state of the art hematologist can't figure this out. I don't know what to do becuase I feel like no matter what I do, I'm anemic. Another problem is that I haven't had my period in 5 months and my OB/GYN wants to induce it, but when I get my period (since it's REALLY heavy) my hemaglobin goes down about 2-4 points!!! So, its a catch, I get screwed either way. UGH!! Im really annoyed!

btw, I dont have pets, so petfood is a non-issue. :)

Kassandra

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      Seeking advice on potential gluten challenge

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    • JudyLou
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      And I agree with Wheatwacked. When a physician tells you that you can't have celiac disease because you're not losing weight, you can be certain that doctor is operating on a dated understanding of celiac disease. I assume you are in the UK by the way you spelled "coeliac". So, I'm not sure what your options are when it comes to healthcare, but I might suggest you look for another physician who is more up to date in this area and is willing to work with you to get an accurate diagnosis. If, in fact, you do not have celiac disease but you know that gluten causes you problems, you might have NCGS (Non Celiac Gluten Sensitivity). There is no test available yet for NCGS. Celiac must first be ruled out. Celiac disease is an autoimmune disorder that damages the lining of the small bowel. NCGS we is not autoimmune and we know less about it's true nature. But we do know it is considerably more common than celiac disease.
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