Anemia

[Marianne82]

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? 

 

 

 

[trents]

  On 1/20/2023 at 2:14 PM, 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? 

 

 

 

Expand Quote  

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]

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]

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]

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

[Marianne82]

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]

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."

[Marianne82]

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]

  On 1/20/2023 at 2:14 PM, 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? 

 

 

 

Expand Quote  

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]

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]

@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]

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]

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]

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

[Marianne82]

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