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

Hit A Bottom!


confusedks

Recommended Posts

confusedks Enthusiast

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


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



Celiac.com Sponsor (A8-M):



gdobson Explorer

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

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

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
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
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
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.


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



Celiac.com Sponsor (A8-M):



aikiducky Apprentice

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

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

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

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

Archived

This topic is now archived and is closed to further replies.

  • 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. - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      Son's legs shaking

    2. - Scott Adams replied to Russ H's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Anti-endomysial Antibody (EMA) Testing

    3. - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      Son's legs shaking

    4. - Scott Adams replied to Paulaannefthimiou's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Bob red mill gluten free oats

    5. - knitty kitty replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      High TTG-IgG and Normal TTG-IgA

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,869
    • Most Online (within 30 mins)
      7,748

    MaryannHall
    Newest Member
    MaryannHall
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

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

  • Posts

    • lizzie42
      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
    • Scott Adams
      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
    • knitty kitty
      @lizzie42, You're being a good mom, seeking answers for your son.  Cheers! Subclinical thiamine deficiency commonly occurs with anemia.  An outright Thiamine deficiency can be precipitated by the consumption of a high carbohydrate meal.   Symptoms of Thiamine deficiency include feeling shakey or wobbly in the legs, muscle weakness or cramps, as well as aggression and irritability, confusion, mood swings and behavior changes.  Thiamine is essential to the production of neurotransmitters like serotonin and dopamine which keep us calm and rational.   @Jsingh, histamine intolerance is also a symptom of Thiamine deficiency.  Thiamine is needed to prevent mast cells from releasing histamine at the slightest provocation as is seen in histamine intolerance.  Thiamine and the other B vitamins and Vitamin C are needed to clear histamine from the body.  Without sufficient thiamine and other B vitamins to clear it, the histamine builds up.  High histamine levels can change behavior, too.  High histamine levels are found in the brains of patients with schizophrenia.  Thiamine deficiency can also cause extreme hunger or conversely anorexia.   High carbohydrate meals can precipitate thiamine deficiency because additional thiamine is required to process carbohydrates for the body to use as fuel.  The more carbohydrates one eats daily, the more one needs additional thiamine above the RDA.  Thiamine is water soluble, safe and nontoxic even in high doses. Keep in mind that gluten-free processed foods like cookies and such are not required to be fortified and enriched with vitamins and minerals like their gluten containing counterparts are.  Limit processed gluten-free foods.  They are often full of empty calories and unhealthy saturated fats and additives, and are high in histamine or histamine release triggers.  It's time you bought your own vitamins to supplement what is not being absorbed due to malabsorption of Celiac disease.  Benfotiamine is a form of Thiamine that has been shown to improve intestinal health as well as brain function. Do talk to your doctors and dieticians about supplementing with the essential vitamins and minerals while your children are growing up gluten free.  Serve nutritionally dense foods.  Meats and liver are great sources of B vitamins and minerals. Hope this helps!  Keep us posted on your progress!
    • Scott Adams
      Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure. You may fall into this category, and eliminating them is the best way to figure this out. Some people substitute gluten-free quinoa flakes for oats if they want a hot cereal substitute. If you are interested in summaries of scientific publications on the topic of oats and celiac disease, we have an entire category dedicated to it which is here: https://www.celiac.com/celiac-disease/oats-and-celiac-disease-are-they-gluten-free/   
    • knitty kitty
      @SamAlvi, It's common with anemia to have a lower tTg IgA antibodies than DGP IgG ones, but your high DGP IgG scores still point to Celiac disease.   Since a gluten challenge would pose further health damage, you may want to ask for a DNA test to see if you have any of the commonly known genes for Celiac disease.  Though having the genes for Celiac is not diagnostic in and of itself, taken with the antibody tests, the anemia and your reaction to gluten, it may be a confirmation you have Celiac disease.   Do discuss Gastrointestinal Beriberi with your doctors.  In Celiac disease, Gastrointestinal Beriberi is frequently overlooked by doctors.  The digestive system can be affected by localized Thiamine deficiency which causes symptoms consistent with yours.  Correction of nutritional deficiencies quickly is beneficial.  Benfotiamine, a form of thiamine, helps improve intestinal health.  All eight B vitamins, including Thiamine (Benfotiamine), should be supplemented because they all work together.   The B vitamins are needed in addition to iron to correct anemia.   Hope this helps!  Keep us posted on your progress!
×
×
  • 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.