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

Anemia


Marianne82

Recommended Posts

Marianne82 Explorer

I have had IBS and severe psychiatric symptoms for a decade. I suggested glutenfree and dairyfree diet would help. Docs were unwilling to test me, blocked the diet (i was in a ward) and convinced me this was a delusion. I decided to ignore their advice, finally, and started to diet. I have minimalized gluten, dairy, egg and unhealthy stuff the last period. I added huge amounts of meat and veggies, because I felt that was needed. Psychosis, depression and anxiety disappeared. Some other symptoms stayed, like problems with fatigue, executive disfunction, hair loss, PMS, IBS, et cetera. 

I just now forced my doc for a bloodtest. Celiac didn't show up, though maybe I minimalized gluten for too long for it to be valid. Lactose intolerance did show up. I consider non-celiac gluten sensitivity too. I do seem to respond to gluten. 

My test said I had anemia too. Somehow, this worries me. I have been eating absurd amounts of meat and veggies the last months, and still have these values: 

Ferritine = 6 (reference value is 20-150)
Hemoglobine = 6 (reference value is 7.5-10)
Hematocrit = 0.32 (reference value is 0.36-0.47)

My doc wasn't concerned and said I should just eat more veggies. And maybe ask the GP. He doesn't think anything else is needed. I am concerned though. I don't know what it is...but something clearly is out of whack. 

What are your thoughts about my blood values? With these values, is anything more needed, besides sticking to diet more strictly? What can I ask for? 

 

 

 


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



Celiac.com Sponsor (A8-M):



trents Grand Master
28 minutes ago, Marianne82 said:

I have had IBS and severe psychiatric symptoms for a decade. I suggested glutenfree and dairyfree diet would help. Docs were unwilling to test me, blocked the diet (i was in a ward) and convinced me this was a delusion. I decided to ignore their advice, finally, and started to diet. I have minimalized gluten, dairy, egg and unhealthy stuff the last period. I added huge amounts of meat and veggies, because I felt that was needed. Psychosis, depression and anxiety disappeared. Some other symptoms stayed, like problems with fatigue, executive disfunction, hair loss, PMS, IBS, et cetera. 

I just now forced my doc for a bloodtest. Celiac didn't show up, though maybe I minimalized gluten for too long for it to be valid. Lactose intolerance did show up. I consider non-celiac gluten sensitivity too. I do seem to respond to gluten. 

My test said I had anemia too. Somehow, this worries me. I have been eating absurd amounts of meat and veggies the last months, and still have these values: 

Ferritine = 6 (reference value is 20-150)
Hemoglobine = 6 (reference value is 7.5-10)
Hematocrit = 0.32 (reference value is 0.36-0.47)

My doc wasn't concerned and said I should just eat more veggies. And maybe ask the GP. He doesn't think anything else is needed. I am concerned though. I don't know what it is...but something clearly is out of whack. 

What are your thoughts about my blood values? With these values, is anything more needed, besides sticking to diet more strictly? What can I ask for? 

 

 

 

You should get checked for pernicious anemia, which is caused by the inability to assimilate B12 which, in turn, is necessary for the absorption of iron. Get you B12 levels checked.

Marianne82 Explorer

Thanks!! I immediately checked with my GP. She will look at my blood values and call back today. I think I remember a family member had pernicious anemia. Read somewhere it runs in families. No idea. Thanks again for the good advice. 

Marianne82 Explorer

GP wants to send me to medical specialist specialized in stomach/GI/liver problems. We also have an appointment for next week, in which she wants to try connect dots with me. Hope it helps. 

trents Grand Master

Good to hear! Sounds like it could be some movement in a positive direction.

Marianne82 Explorer

I hope so. I still notice doctors, her too, are hesitant to take me seriously. But at least she wants to look underneath the surface. She agreed it was odd that I have been binging on meat and veggies and still am anemic. She also hopefully helps me with the dairy intolerance. 

GF-Cate Enthusiast

If you are menstruating it can actually be quite difficult to get the US RDA of iron which is 18mg/day for women vs. only 8mg for men (then reverts to 8mg/day for post-menopausal women) -- and in pregnancy it is 27mg/day -- on a regular basis. More than 18mg/day would be needed of course if you are trying to replenish and build iron stores. For example, beef (3oz has 2.5mg/iron) or lamb (3oz has 2mg/iron) or organ meat, such as beef liver (3oz has 5mg/iron) -- I know for me it is nearly impossible -- both volume and cost -- to consume adequate iron from diet alone as I am deficient and trying to reverse that. 

Even when I am quite intentional about it, I find it difficult and turn to supplementation (I take organ meat capsules and a liquid non-heme iron as every iron pill I have tried gives me GI distress).  

Plant based iron sources (non-heme) are less well absorbed than animal based (heme & non-heme). And if any of your digestive tract is damaged, that can inhibit absorption as well.

https://ods.od.nih.gov/factsheets/iron-healthprofessional/

Also keep in mind: "Some plant-based foods that are good sources of iron, such as spinach, have low iron bioavailability because they contain iron-absorption inhibitors, such as polyphenols."


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



Celiac.com Sponsor (A8-M):



Marianne82 Explorer

Thanks. I'm having a somewhat bad day (PMS). So I can't take much information in atm. Will read better later. 

I have quite heavy periods because of a myoma, so this might be part of the issue. I have been binging on meat and craving liver. And still. I dont think I can get enough iron in food indeed. I suspect getting the iron up a bit in some other way, might help me have more energy and concentration to start dealing with the rest of the mess. Bought a bottle of liquid iron. And went on a quest to find organ meat capsules. Only the internet has them, so I'm about to order some. I hope it works. I also hope my GP will think with me. 

Thanks for getting me started. 

patty-maguire Contributor
On 1/20/2023 at 9:14 AM, Marianne82 said:

I have had IBS and severe psychiatric symptoms for a decade. I suggested glutenfree and dairyfree diet would help. Docs were unwilling to test me, blocked the diet (i was in a ward) and convinced me this was a delusion. I decided to ignore their advice, finally, and started to diet. I have minimalized gluten, dairy, egg and unhealthy stuff the last period. I added huge amounts of meat and veggies, because I felt that was needed. Psychosis, depression and anxiety disappeared. Some other symptoms stayed, like problems with fatigue, executive disfunction, hair loss, PMS, IBS, et cetera. 

I just now forced my doc for a bloodtest. Celiac didn't show up, though maybe I minimalized gluten for too long for it to be valid. Lactose intolerance did show up. I consider non-celiac gluten sensitivity too. I do seem to respond to gluten. 

My test said I had anemia too. Somehow, this worries me. I have been eating absurd amounts of meat and veggies the last months, and still have these values: 

Ferritine = 6 (reference value is 20-150)
Hemoglobine = 6 (reference value is 7.5-10)
Hematocrit = 0.32 (reference value is 0.36-0.47)

My doc wasn't concerned and said I should just eat more veggies. And maybe ask the GP. He doesn't think anything else is needed. I am concerned though. I don't know what it is...but something clearly is out of whack. 

What are your thoughts about my blood values? With these values, is anything more needed, besides sticking to diet more strictly? What can I ask for? 

 

 

 

Low iron and lactose intolerance are both symptoms of celiac disease as are the fatigue, hair loss etc.  It’s quite possible as you said that you weren’t eating enough gluten for an accurate test. Look up “gluten challenge” for more info, but basically it’s 2 or 3 slices of bread per day for 6 - 8 weeks. My suggestion would be to find a more supportive doctor then do the gluten challenge and get a proper diagnosis. The second possible approach is to decide for yourself that you have celiac and get serious about the diet. You can also take an iron supplement but that’s a band-aid, doesn’t solve the problem. 
 

All the best

Patty

Marianne82 Explorer

Thanks. 

I don't dare do a gluten challenge at this moment. I just decided to be very careful with what I eat now, and quit gluten and dairy totally. I hope my body will repair itself, if I'm giving it enough rest. Gluten seems to trigger responses every time, so I leave that out. 

knitty kitty Grand Master

@Marianne82,

I would get too sick to complete a gluten challenge, so I asked my doctor for a genetic test.  It was a simple blood test.

Genetic testing for Celiac Disease does NOT require gluten consumption.

Celiac Disease is inherited.  You have to have the Celiac genes in order to develop Celiac Disease.  

The most common Celiac genes are HLA DQ 2 and HLA DQ 8.  There are other less common Celiac genes out there.  

Having one or more genes for Celiac, and having symptom improvement on a gluten free diet can allow a diagnosis of Celiac Disease.  

The Celiac genes need a stressor to become activated.  Stressors can be a physical stress (like an infection, surgery, or physical injury) or an emotional trauma.  Even pregnancy can be a trigger.  

During physical and emotional stress, the body's requirements for thiamine increase.  Thiamine deficiency affects the HLA genes and makes them become active.  These HLA genes code for  autoimmune diseases, like Celiac, diabetes, thyroid disease, Sjogren's, etc. 

Iron deficiency requires more than just iron to correct.  Thiamine, Cobalamine Vitamin B12, Pyridoxine Vitamin B6, Riboflavin Vitamin B2, Folate, Vitamin C, and Niacin Vitamin B3 along with minerals like copper and zinc are needed. 

Some Celiacs have a gene called the MTHFR gene.  With the MTHFR gene, the body utilizes methylated forms of vitamins.  So methylcobalamin, P5P, and methylfolate are better utilized by the body.  

Getting diagnosed is important not only to improve digestive symptoms, but to prevent further autoimmune diseases.  

Hope this helps!

Marianne82 Explorer

Thanks! 

I really wish to get diagnosed, but doctors refuse to do further testing. They think they save money by being extremely frugal on basic testing here. They do not understand, that they make everyone chronically ill in this way. 

I see a naturopath doctor next week. I hope he is willing to take a better look. If he won't, I will look into  private tests. My doc wants me to just take an iron pill, but I respond badly to that and make the underlying gut problem worse. Also, I wish to know the full profile first. To indeed correct all the imbalances, as well as the underlying problems. Not just bluntly add one single thing and expect that to solve the issue.  

Till next week, I'll just stick to a very careful diet. Hope the ND then helps me with a well-structured plan. 

trents Grand Master

There is 3rd party genetic testing trough companies like 123 and me and I think it costs arund $200 US. There is also 3rd party antibody testing through companies like Imaware which costs about $100 US. But of course, the antibody testing would require a gluten challenge.

Raptorsgal Enthusiast

Have you had an iron infusion I just had one this week because my iron very low I need to get another next month 

  • 1 month later...
Marianne82 Explorer

No, my GP doesn't want to give me one....

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
  • 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 replied to Jmartes71's topic in Related Issues & Disorders
      12

      My only proof

    2. - NanceK replied to Jmartes71's topic in Related Issues & Disorders
      12

      My only proof

    3. - knitty kitty replied to Larzipan's topic in Related Issues & Disorders
      39

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

    4. - trents replied to Larzipan's topic in Related Issues & Disorders
      39

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

    5. - Scott Adams replied to Larzipan's topic in Related Issues & Disorders
      39

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,369
    • Most Online (within 30 mins)
      7,748

    Carole Eva
    Newest Member
    Carole Eva
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • knitty kitty
      You're right, doctors usually only test Vitamin D and B12.  Both are really important, but they're not good indicators of deficiencies in the other B vitamins.  Our bodies are able to store Vitamin B12 and Vitamin D in the liver for up to a year or longer.  The other B vitamins can only be stored for much shorter periods of time.  Pyridoxine B 6 can be stored for several months, but the others only a month or two at the longest.  Thiamine stores can be depleted in as little as three days.  There's no correlation between B12 levels and the other B vitamins' levels.  Blood tests can't measure the amount of vitamins stored inside cells where they are used.  There's disagreement as to what optimal vitamin levels are.  The Recommended Daily Allowance is based on the minimum daily amount needed to prevent disease set back in the forties when people ate a totally different diet and gruesome experiments were done on people.  Folate  requirements had to be updated in the nineties after spina bifida increased and synthetic folic acid was mandated to be added to grain products.  Vitamin D requirements have been updated only in the past few years.   Doctors aren't required to take as many hours of nutritional education as in the past.  They're educated in learning institutions funded by pharmaceutical corporations.  Natural substances like vitamins can't be patented, so there's more money to be made prescribing pharmaceuticals than vitamins.   Also, look into the Autoimmune Protocol Diet, developed by Dr. Sarah Ballantyne, a Celiac herself.  Her book The Paleo Approach has been most helpful to me.  You're very welcome.  I'm glad I can help you around some stumbling blocks while on this journey.    Keep me posted on your progress!  Best wishes! P.S.  interesting reading: Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/
    • NanceK
      So interesting that you stated you had sub clinical vitamin deficiencies. When I was first diagnosed with celiac disease (silent), the vitamin levels my doctor did test for were mostly within normal range (lower end) with the exception of vitamin D. I believe he tested D, B12, magnesium, and iron.  I wondered how it was possible that I had celiac disease without being deficient in everything!  I’m wondering now if I have subclinical vitamin deficiencies as well, because even though I remain gluten free, I struggle with insomnia, low energy, body aches, etc.  It’s truly frustrating when you stay true to the gluten-free diet, yet feel fatigued most days. I’ll definitely try the B-complex, and the Benfotiamine again, and will keep you posted. Thanks once again!
    • knitty kitty
      Segments of the protein Casein are the same as segments of the protein strands of gluten, the 33-mer segment.   The cow's body builds that Casein protein.  It doesn't come from wheat.   Casein can trigger the same reaction as being exposed to gluten in some people.   This is not a dairy allergy (IGE mediated response).  It is not lactose intolerance.  
    • trents
      Wheatwacked, what exactly did you intend when you stated that wheat is incorporated into the milk of cows fed wheat? Obviously, the gluten would be broken down by digestion and is too large a molecule anyway to cross the intestinal membrane and get into the bloodstream of the cow. What is it from the wheat that you are saying becomes incorporated into the milk protein?
    • Scott Adams
      Wheat in cow feed would not equal gluten in the milk, @Wheatwacked, please back up extraordinary claims like this with some scientific backing, as I've never heard that cow's milk could contain gluten due to what the cow eats.
×
×
  • 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.