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

Hi,new Here! Went To The Dr. Due To Extreme Fatigue...

Mamatomy8

Recommended Posts

Mamatomy8 Rookie
Mamatomy8
Posted

Hi, I'm new and looking for other's experience and advice. I recently went to the dr., due to having extreme fatigue for several months. Much to my surprise, my blood count/ hemoglobin was extremely low, so much that I needed 2 blood transfusions . I was shocked! Have always been slightly anemic, but nothing like that. 

Found out later, my iron and vitamin D were also low. 

 

Got a referral to see a GI dr. and went there this week. He wants me to have an endoscopy, colonoscopy and Celiac blood test, which is  what brought me here! I had that done and am awaiting results.The endo  is scheduled for next week. 

 

so I was extremely surprised about the celiac testing, it's something that really wouldn't have crossed my mind. Aside from the anemia, fatigue and vit. deficiency, I haven't noticed many other symptoms. I have had some heartburn lately and started taking acid reducers, also insomnia and headaches. But no GI symptoms really, unless I drink a few beers, then I feel extremely bloated with a stomach ache.

 

Anyone else have this type of experience prior to diagnosis? 

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

Celiac.com Sponsor (A8-M):


LauraTX Rising Star
LauraTX
Posted

My diagnosis was pretty much by accident.  They thought I had ulcers and did an endoscopy.  Once they got everything figured out and I went on a gluten-free diet, many other things went away that I didn't realize were from the Celiac, including anemia and peripheral neruopathy.  There actually are a lot of people like me who do not have the "classic" diarrhea and GI symptoms that are associated with Celiac disease.  Given how severe your deficiencies are, I do hope that there is a solid answer, and Celiac would probably be the least bad and the most simple to treat.  Let us know when you find out results!  

Mamatomy8 Rookie
Mamatomy8
Posted
  • Author

My diagnosis was pretty much by accident.  They thought I had ulcers and did an endoscopy.  Once they got everything figured out and I went on a gluten-free diet, many other things went away that I didn't realize were from the Celiac, including anemia and peripheral neruopathy.  There actually are a lot of people like me who do not have the "classic" diarrhea and GI symptoms that are associated with Celiac disease.  Given how severe your deficiencies are, I do hope that there is a solid answer, and Celiac would probably be the least bad and the most simple to treat.  Let us know when you find out results!  

Thank yo Laura.. I agree on the celiac being the least bad! Other possible causes included stomach or colon cancer... I am praying for it to be celiac - or at least something else! 

nvsmom Community Regular
nvsmom
Posted

That's impressive that your doctor thought of celiac disease.  For most doctors, I don't think it would have crossed their minds.

 

Don't tr the gluten-free diet until testing is done because it can affect your results.  If you have questions about your results (get copies) we can probably help you with it.

 

My symptoms involved more stomach aches but my symptoms weren't crippling, just a stomach ache a few times a day.  I also had a lot of migraines (more of a problem than the stomach) and bloating - beer was definitely the worst for that.

 

I became very anemic once. Like you the doctors wanted to do a blood transfusion (I declined because this was back in the early days of AIDS and poor blood screening) but the cause of mine was ITP, when white blood cells mark platelets for destruction, so I was essentially bleeding out.  It can be linked to celiac disease. .. Were your platelet counts fine?  

 

Good luck to you.  I hope you get clear answers and are feeling better soon!

1desperateladysaved Proficient
1desperateladysaved
Posted

Extreme fatigue and mind fog were my most prominent symptom.  I also had low D, anemia, low ferritin.  I am glad you are getting to the bottom of it!

Mamatomy8 Rookie
Mamatomy8
Posted
  • Author

That's impressive that your doctor thought of celiac disease.  For most doctors, I don't think it would have crossed their minds.

 

Don't tr the gluten-free diet until testing is done because it can affect your results.  If you have questions about your results (get copies) we can probably help you with it.

 

My symptoms involved more stomach aches but my symptoms weren't crippling, just a stomach ache a few times a day.  I also had a lot of migraines (more of a problem than the stomach) and bloating - beer was definitely the worst for that.

 

I became very anemic once. Like you the doctors wanted to do a blood transfusion (I declined because this was back in the early days of AIDS and poor blood screening) but the cause of mine was ITP, when white blood cells mark platelets for destruction, so I was essentially bleeding out.  It can be linked to celiac disease. .. Were your platelet counts fine?  

 

Good luck to you.  I hope you get clear answers and are feeling better soon!

Thanks for the reply. I don't know what ITP is, but they didn't mention my platelets being low. Only hemoglobin, iron and Vit. D. 

nvsmom Community Regular
nvsmom
Posted

Thanks for the reply. I don't know what ITP is, but they didn't mention my platelets being low. Only hemoglobin, iron and Vit. D.

ITP used to stand for idiopathic thrombocytopenia purpura. It is an autoimmune problem. Thrombocytopenia is when you get low platelets for some reason or other. Platelets are responsible for clotting so if they are low you are more likely to bruise, get very heavy periods, and nose and gum bleeds. It can cause anemia BUT it can also be caused by other problems that cause low blood volume/production.... It isn't too common. Low hemoglobin, D, and iron is pretty common amount celiacs and often improves after many month gluten-free.

Best wishes.

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

Celiac.com Sponsor (A8-M):


frieze Community Regular
frieze
Posted

the acid reducers didn't help your anemia any, good luck.

Mamatomy8 Rookie
Mamatomy8
Posted
  • Author

Well my blood test was negative...  feeling discouraged. Endo /colonoscopy tomorrow. I'll be glad when that is over with, but I really need some answers! 

Had my hemoglobin retested and it hasn't gone up since my blood transfusion a month ago- still a bit low and I've been taking iron faithfully. hmmmm

1desperateladysaved Proficient
1desperateladysaved
Posted

I hope your endoscopy will be conclusive for you.  It sure seems your absorption isn't working so good assuming your diet is rich in nutrients.

 

Dee

nora-n Rookie
nora-n
Posted

they were looking for bleeding with iron that low, and blood transfusion not helping

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. knitty kitty
      - knitty kitty replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      Positive biopsy

      In the study linked above, the little girl switched to a gluten free diet and gained enough weight that that fat pad was replenished and surgery was not needed. Here's the full article link... Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pmc.ncbi.nlm.nih.gov/articles/PMC6476019/
    2. knitty kitty
      - knitty kitty replied to Jordan Carlson's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Fruits & Veggies

      Hello, @Jordan Carlson, So glad you're feeling better. Tecta is a proton pump inhibitor. PPI's also interfere with the production of the intrinsic factor needed to absorb Vitamin B12. Increasing the amount of B12 you supplement has helped overcome the lack of intrinsic factor needed to absorb B12. Proton pump inhibitors also reduce the...
    3. knitty kitty
      - knitty kitty replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      Positive biopsy

      @pothosqueen, Welcome to the tribe! You'll want to get checked for nutritional deficiencies and start on supplementation of B vitamins, especially Thiamine Vitamin B 1. There's some scientific evidence that the fat pad that buffers the aorta which disappears in SMA is caused by deficiency in Thiamine. In Thiamine deficiency, the body...
    4. Scott Adams
      0

      Inmate with Celiac Disease Wins $630,000 After Jail Denies Gluten-Free Food

    5. trents
      - trents replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      Positive biopsy

      Wow! You're pretty young to have a diagnosis of SMA syndrome. But youth also has its advantages when it comes to healing, without a doubt. You might be surprised to find out how your health improves and how much better you feel once you eliminate gluten from your diet. Celiac disease is an autoimmune disorder that, when gluten is consumed, triggers an...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,015
    • Most Online (within 30 mins)
      7,748
    CravingADonut
    Newest Member
    CravingADonut
    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

    • knitty kitty
      Positive biopsy

      By knitty kitty · Posted

      In the study linked above, the little girl switched to a gluten free diet and gained enough weight that that fat pad was replenished and surgery was not needed.   Here's the full article link... Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pmc.ncbi.nlm.nih.gov/articles/PMC6476019/
    • knitty kitty
      Fruits & Veggies

      By knitty kitty · Posted

      Hello, @Jordan Carlson, So glad you're feeling better.   Tecta is a proton pump inhibitor.  PPI's also interfere with the production of the intrinsic factor needed to absorb Vitamin B12.  Increasing the amount of B12 you supplement has helped overcome the lack of intrinsic factor needed to absorb B12. Proton pump inhibitors also reduce the production of digestive juices (stomach acids).  This results in foods not being digested thoroughly.  If foods are not digested sufficiently, the vitamins and other nutrients aren't released from the food, and the body cannot absorb them.  This sets up a vicious cycle. Acid reflux and Gerd are actually symptoms of producing too little stomach acid.  Insufficient stomach acid production is seen with Thiamine and Niacin deficiencies.  PPI's like Tecta also block the transporters that pull Thiamine into cells, preventing absorption of thiamine.  Other symptoms of Thiamine deficiency are difficulty swallowing, gagging, problems with food texture, dysphagia. Other symptoms of Thiamine deficiency are symptoms of ADHD and anxiety.  Vyvanse also blocks thiamine transporters contributing further to Thiamine deficiency.  Pristiq has been shown to work better if thiamine is supplemented at the same time because thiamine is needed to make serotonin.  Doctors don't recognize anxiety and depression and adult onset ADHD as early symptoms of Thiamine deficiency. Stomach acid is needed to digest Vitamin C (ascorbic acid) in fruits and vegetables.  Ascorbic acid left undigested can cause intestinal upsets, anxiety, and heart palpitations.   Yes, a child can be born with nutritional deficiencies if the parents were deficient.  Parents who are thiamine deficient have offspring with fewer thiamine transporters on cell surfaces, making thiamine deficiency easier to develop in the children.  A person can struggle along for years with subclinical vitamin deficiencies.  Been here, done this.  Please consider supplementing with Thiamine in the form TTFD (tetrahydrofurfuryl disulfide) which helps immensely with dysphagia and neurological symptoms like anxiety, depression, and ADHD symptoms.  Benfotiamine helps with improving intestinal health.  A B Complex and NeuroMag (a magnesium supplement), and Vitamin D are needed also.
    • knitty kitty
      Positive biopsy

      By knitty kitty · Posted

      @pothosqueen, Welcome to the tribe! You'll want to get checked for nutritional deficiencies and start on supplementation of B vitamins, especially Thiamine Vitamin B 1.   There's some scientific evidence that the fat pad that buffers the aorta which disappears in SMA is caused by deficiency in Thiamine.   In Thiamine deficiency, the body burns its stored fat as a source of fuel.  That fat pad between the aorta and digestive system gets used as fuel, too. Ask for an Erythrocyte Transketolace Activity test to look for thiamine deficiency.  Correction of thiamine deficiency can help restore that fat pad.   Best wishes for your recovery!   Interesting Reading: Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pubmed.ncbi.nlm.nih.gov/31089433/#:~:text=Affiliations,tissue and results in SMAS.  
    • trents
      Positive biopsy

      By trents · Posted

      Wow! You're pretty young to have a diagnosis of SMA syndrome. But youth also has its advantages when it comes to healing, without a doubt. You might be surprised to find out how your health improves and how much better you feel once you eliminate gluten from your diet. Celiac disease is an autoimmune disorder that, when gluten is consumed, triggers an attack on the villous lining of the small bowel. This is the section of the intestines where all our nutrition is absorbed. It is made up of billions of tiny finger-like projections that create a tremendous surface area for absorbing nutrients. For the person with celiac disease, unchecked gluten consumption generates inflammation that wears down these fingers and, over time, greatly reduces the nutrient absorbing efficiency of the small bowel lining. This can generate a whole host of other nutrient deficiency related medical problems. We also now know that the autoimmune reaction to gluten is not necessarily limited to the lining of the small bowel such that celiac disease can damage other body systems and organs such as the liver and the joints and cause neurological problems.  It can take around two years for the villous lining to completely heal but most people start feeling better well before then. It's also important to realize that celiac disease can cause intolerance to some other foods whose protein structures are similar to gluten. Chief among them are dairy and oats but also eggs, corn and soy. Just keep that in mind.
    • pothosqueen
      Positive biopsy

      By pothosqueen · Posted

      26F!
×
×
  • 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.