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Anemia


Marianne82

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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? 

 

 

 


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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."


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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....

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    • Scott Adams
      I’m so sorry you’re going through this—it sounds like you’ve been on a really challenging journey with your health. Your symptoms (stomach pains, bloating, low iron, joint pain, brain fog, etc.) do sound like they could be related to gluten sensitivity or another condition like non-celiac gluten sensitivity (NCGS). It’s interesting that your bloodwork hasn’t shown celiac markers, but the lymphocytosis in your duodenum could still point to some kind of immune response or irritation, even if it’s not classic celiac disease. The fact that your symptoms improved when you went gluten-free but returned when you reintroduced gluten (especially with the donut incident) is a pretty strong clue that gluten might be a trigger for you. It’s also worth noting that symptoms can be inconsistent, especially if your body is still healing or if there are other factors at play, like stress, cross-contamination, or other food intolerances. Do you have more info about your blood test results? Did they do a total IGA test as well? 
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      For years, I have dealt with various gluten related symptoms like stomach pains, bloating, IBS-C "ish" digestive issues, low iron, low Vit D, joint pains, brain fog, and more. I finally got a double scope and stomach looks clear, but I have some lymphocytosis of the duodenum. I am wondering if this sounds familiar to anyone, where I have not shown celiac red flags in bloodwork IGA tests. WIll be following up soon with GI Dr, but so far, my symptoms are intermittent. I go back and forth with gluten-free diet (especially this past year.... did two tests where the stomach pains I had went away without gluten in diet. HOWEVER, I added it back a third time and I didn't get the pains)   Anyway, I am so confused and scared to eat anything now because I recently had a few bites of a yeasty donut and I immediately got so sick. Any thoughts??
    • Peggy M
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    • Scott Adams
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    • trents
      Yes, I can imagine. My celiac journey started with a rejection of a blood donation by the Red Cross when I was 37 because of elevated liver enzymes. I wasn't a drinker and my family doctor checked me for hepatitis and I was not overweight. No answers. I thought no more about it until six years later when I landed a job in a healthcare setting where I got annual CMP screenings as part of my benefits. The liver enzymes were continually elevated and creeping up every year, though they were never super high. My primary care doc had no clue. I got really worried as your liver is pretty important. I finally made an appointment with a GI doc myself and the first thing he did was test me for celiac disease. I was positive. That was in about 1996. After going on a gluten-free diet for three months the liver enzymes were back in normal range. Another lab that had gotten out of whack that has not returned to normal is albumin/total protein which are always a little on the low side. I don't know what that's about, if it's related to the liver or something else like leaky gut syndrome. But my doctors don't seem to be worried about it. One thing to realize is that celiac disease can onset at any stage of life. There is a genetic component but there is also an epigenetic component. That is, the genetic component is not deterministic. It only provides the potential. There needs also to be some health or environmental stressor to activate the latent gene potential. About 40% of the population have the genetic potential to develop celiac disease but only about 1% actually do.
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