Pernicious Anemia Caused By Gluten/celiac ?

[Sanjoseguy]

All my life I had what I call a "sensitive" stomach. I have always passed stools twice a day atleast all my life. But no health issues as a result of that. Very healthy, full of energy always. But it changed all of a sudden 3 months back after the new year bash. I am not a heavy drinker at all. But I had 4-5 drinks on new year eve and next day I felt sick a little. Which is normal. But my stomach went for a toss completely and has never recovered at all since then. Chronic diarrhea, feeling sick after eating, weight loss of 15 pounds in past 3 months, intermittent nausea. I have seen 3 GIs so far. They have done all the tests ranging from parasites stool test, H Pylori, Endoscopy, Colonoscopy, Capsule Endoscopy, celic panel blood test etc. Everything came out negative until few days back, when they saw that my B 12 level was really low. The doctor ordered a test for pernicious anemia to rule that out as a cause. And it came out positive! Pernicious Anemia can cause B12 deficiency. Its an auto immune disease where your body cannot abosrob B12. Doctor was suspecting B12 deficiency could be caused by malabsorption due to GI issues but this pernicious anemia discovery threw us all off.

I keep thinking about Celiac disease being the cause here. Because my symptoms match with what people say. Half of the day my head feels so warm as if I have fever when I don't. I feel sick after eating. It looks like my stomach goes through diarrhea as a regular cleansing process. Because I will have diarrhea one day. Second day I can retain food. Third day diarrhea again!

I have heard that Celiac disease can create auto immunity issues. So that might cause my pernicious anemia. There has to be something going on other than pernicious anemia . Because Pernicious Anemia can cause fatigue and nervous system issues but not really chronic diarrhea and weight loss.

Any experience dealing with something like this?

[mushroom]

Welcome to the forum, Sanjoseguy. I used to live in San Jose I assume you mean CA and not Costa Rica.

In my blood nutrient testing after going gluten free, I showed up with pernicious anemia. Low B12, low folate, high MCV (size of red blood cells). My MCV had been high for a long time, but "just a little bit high, not enough to worry about" and I had been fatigued, exhausted, wrung out for a long time. Yes, it is due to malabsorption of nutrients. Even if you test negative for celiac, you may still be gluten intolerant. Give it up for a week and see if it makes any difference in your GI tract. There is a 20-30% error rate on the celiac testing, producing false negatives, and there is also a condition currently tagged as non-celiac gluten intolerance for want of a better terminology, for which no test has yet been devised to detect, but which is very real and produces most of the same symptoms as celiac disease. The only difference is that you have not studied hard enough for the test and so they tell you you are negative. Currently, the only real way you can prove that gluten is the problem is No.1 to have the endoscopy with biopsy (many people negative on blood work show up positive on biopsy), or No.2 stop eating gluten and overcome your symptoms. Also make sure you get some supplementation of B12 (most people use susblingual but I had to do injections because I did not tolerate the sublinguals), and to balance it out take extra folate. Did they check your Vit. D levels too, because those could be low, as could potassium, magnesium, zinc. Also you probably need your thryoid checked.

[Sanjoseguy]

Thanks Mushroom. Yes I am in San Jose CA :-) and not in Costa Rica.

My Vitamin D is also low. The doctor put me on 50,000 IOU once per week. Other vitamins are ok other than B12 (which is at 174).

Did you actually had/have pernicious anemia? That is you tested via intrinsic factor test? Or you just have megoblastic anemia?

I am being told by my doc that there is no correlation between pernicious anemia and celiac/gluten intolerance. And they need to be managed separately.

I went on gluten free diet for two weeks. First week was wonderful. Although the wheat craving was killing me but for the first time I had regular consistency in the stool instead for slurry powder like stool. But by second week it went back to square one pretty much in terms of stools. I do believe symptoms like nausea/malaise improved when I was not on gluten. But then wheat craving was balancing it out. So it was hard to detect. I started eating a little wheat every day now. I want to see how I feel again. Is it true that in " gluten intolerance" you can have a little gluten while in "true celiac disease" you must completely avoid it?

They did endoscopy and colonoscopy for me and took biopsies which they declared normal. I don't know if they took it from the right places in the intestine to check for celiac. I need to pester my GI for that.

Its super interesting you ask about Thyroid. My TSH level has come down from 0.9 in December to 0.54 in March. My doctor thinks that this is not to worry because its still in normal range. To me, its getting dangerously close to being hyperthyroid. And if the trend continues it will go below 0.3 which is when they officially declare it to be hyperthyroidism.

My mom is hyperthryoid. So I am really curious about watching my thyroid. The fact that TSH has moved in the direction of hyperthyrodimg during the time of my sickness is very signficant to me but not to my doctor. Unless TSH goes below 0.3, my doctor wont talk about it. Do you think hyperthyroidism, pernicious anemia, and celiac might all be related with celiac being the lead culprit triggering all these auto immunity issues. I know we are making theories here, but sometimes there is enough wisdom in the crowd :-)

[mushroom]

Lots of doctors tell their patients that if you are "only" gluten intolerant you don't hae to be as careful with the diet as if you are celiac. This is really not true. You should be just as strict regardless. First off, your test results could be a false negative - thre is a 20% error rate (on the negative side, not positive) in both blood and biopsy. Second, although non-celiac gluten intolerants do not appear to get the intestinal damage that celiacs do (hence the negative biopsies), gluten is still harming them, and you wouldn't want to go through life taking "just a little" arsenic each day, would you? One of these days, it will catch up with you, most likely. And where do you draw the line. A little bit here, a beer or two there, just one or two slices of pizza, and before you know it you are a glutenous glutton again

A lot of people go through several weeks of gluten withdrawal, because it acts a an opioid in the body, and can make it seem like you are worse without gluten than with it. But really, it is just like quitting smoking, heroin, caffeine.... you just have to get it out of your system and get over the hump and the cravings go away. Stick with it. You said you felt better until the withdrawal feelings set in - isn't it better to feel better all the time? Also, recovery is not a straight upward line, ever, in celiac. You will have setbacks, you will be cross-contaminated, you will unknowingly ingest gluten, people will try to insist that "just a little bit won't hurt" and keep tempting you.

Yes, one autoimmune disease does beget another, and celiacs are particularly prone to others, from Hashimoto's to Grave's, from diabetes to Sjogren's, to rheumatoid arthritis, psoriasis, lupus, the list is seemingly endless. It is the lucky celiac indeed who has no other autoimmune diseases. While a gluten free diet can improve most of these conditions and even cause some to vanish, others persist and do have to be treated as if they were separate entities. It is always worth trying to alleviate an autoimmune disease with diet. Continue to have your thyroid checked at regular intervals, but many here would love to have your TSH reading. Just make sure, as you say, that you do not go hyper. Some posters on here do alternate between hyper and hypo.

And no, I was not tested for intrinsic factor - I just had all the lab readings which indicated it.

[Skylark]

My mom is hyperthryoid. So I am really curious about watching my thyroid. The fact that TSH has moved in the direction of hyperthyrodimg during the time of my sickness is very signficant to me but not to my doctor. Unless TSH goes below 0.3, my doctor wont talk about it. Do you think hyperthyroidism, pernicious anemia, and celiac might all be related with celiac being the lead culprit triggering all these auto immunity issues. I know we are making theories here, but sometimes there is enough wisdom in the crowd :-)

Autoimmunity runs in families, and it's all interconnected. Once you have one autoimmune disease you are at higher risk for others. I typed "pernicious anemia celiac" into pubmed and belive it or not the first article that came up was an association not with celiac but with Graves' disease.

It's hard to know what happened in what order. You've got the pernicious anemia antibodies but not the celiac ones...yet. Maybe it all came on at once; maybe B12 deficiency is causing other problems. Or maybe your gut feeling is right and it started with celiac. I doubt you'll ever know for sure.

Whatever is going on, you do need to pay attention to the thyroid. The good news is that Graves' goes away on its own fairly often and if you're gluten intolerant/celiac, going off gluten may start to reverse the general inflammation and settle things down. You might also Google for anti-inflammatory diets where you control omega-3/omega-6 ratio, lower saturated fats, and eat fruits and vegetables for the bulk of your calories.

[UKGail]

Hi Sanjoseguy - my great grandmother had pernicious anemia. She passed over 40 years ago, before there was much awareness of celiac disease. Of her 4 daughters, 1 seems healthy as far as we know. One was very thin and had stomach issues her hole life. One was very thin and had many health issues including infertility. The other (my grandmother) was overweight and had rheumatoid arthritis. Of my grandmother's 4 daughters, 2 were diagnosed as celiac in middle age, another one is overweight and has health issues but hates doctors so won't address her problems. The other, my Mother, is gluten and lactose sensitive, but won't go for testing for insurance reasons. I am gluten and lactose intolerant. I don't know any more than that as my doctors did not follow the diagnosis protocols correctly. One of my 2 two teenage daughters is lactose intolerant, at the very least. Half of my cousins are celiacs. There are thyroid issues in the family, including me. There are also various allergies in the family, particularly dairy, and there is at least one other rare auto-immune disorder.

So yes, make sure you are fully tested for everthing, and even if the tests are negative, give the gluten free diet a strict and lengthy trial before discounting it. My instinct is that gluten intolerance is the underlying issue in our family, and that the other problems are probably secondary due gluten ingestion.

[IrishHeart]

For what it is worth, I had a B-12 deficiency, Folate deficiency, D deficiency, thyroid dysfunction (declared hypothyroid and treated and then, I zoomed to hyper.) It was crazy for a long time. I kept begging doctors to explain it all (it was unDxed Celiac all along) --and now, my thyroid functions NORMALLY. I take NO meds and show no antibodies and have no symptoms of thyroid disease. Family members who have not gone gluten-free--dozens of them--take meds for thyroid disease. Some have Hashi's and some have Graves. Two have had the gland removed. My Dad had pernicious anemia (and was a celiac if there ever was one, but we'll never know.)

I say: Yes! they are ALL related and pernicious anemia CAN be related to celiac.

Pernicious Anemia Index (medicinenet.)

Pernicious anemia is a blood disorder in which the body does not make enough red blood cells due to a lack of vitamin B12 in the blood. Pernicious anemia can develop from a lack of a protein that helps the body absorb vitamin B12, not getting enough B12 in the diet, and certain intestinal conditions that interfere with the absorption of vitamin B12 such as Crohn's disease, celiac sprue, or ulcerative colitis. .

and

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Best wishes to you and welcome to the Forum!

[Sanjoseguy]

First of all, a sincere and heartfelt thank you to all. I wish the GI doctors had half the care and support which is reflected in your replies.

I have decided to go on strict gluten free again. I had gone to a naturopath by the way and they did the food allergy blood test (ELISHA methodology from Biotek). They found that I have IGg intolerance to Eggs and Baker's yeast and Sesame seeds. So if I believe that test, I am going to be now gluten free, egg free, any kind of bread free (because of bakers's yeast) and dairy free. Its going to be hard :-). Brown rice and quinoa and Millet are going to be my friends. I do eat fish and chicken and all the vegetables. I am on daily B12 dosage now (which you put under your tongue).

Also in a month, I will pester my doctor to repeat the thyroid probably the T3/t4 test.

Two quick questions:

1. Does gluten intolerance/Celiac can trigger in, all of a sudden in full flow? Till last year, although i had sensitive stomach I was never ever sick. And then it happened all of a sudden post starting that new year drinking incident. Is that normal? Is that's how Celiac sets in, in terms of unleashing its symptoms?

2.Is there a nutrionist, I can go to which can recommend a balanced gluten free diet keeping in mind my dietary constraints. How I e do I find good nutritionist in my area who are celiac aware. I called my hospital but I did not get the feeling that they had any dietician who really was an expert in this.

[Skylark]

1. Celiac can trigger suddenly, though it sounds like your sensitive stomach may have been gluten intolerance all along.

2. If you are eating meats/fish, fresh fruits and vegetables, and some whole grains you will be better off than probably 80% of your countrymen in terms of nutrition. I don't think you need anything in particular from a dietician. One thing to be aware of is that American food is pretty deficient in minerals and trace elements from over-farming and poor soil conservation. Gluten-free diets oddly enough tend to be a little poor in molybdenum. You can probably get away without supplements if you are eating mostly organic but otherwise I'd recommend a good vitamin/mineral/trace for general health like Solgar or Metagenics.

[Sanjoseguy]

If you are eating meats/fish, fresh fruits and vegetables, and some whole grains you will be better off than probably 80% of your countrymen in terms of nutrition. I don't think you need anything in particular from a dietician. One thing to be aware of is that American food is pretty deficient in minerals and trace elements from over-farming and poor soil conservation. Gluten-free diets oddly enough tend to be a little poor in molybdenum. You can probably get away without supplements if you are eating mostly organic but otherwise I'd recommend a good vitamin/mineral/trace for general health like Solgar or Metagenics.

Thanks Skylark. Any kind of Vitamins and mineral supplements almost always give me stomach upset/diarrhea. So can you please recommend any which are specifically know to be easy on stomach.

Also is it that wheat contains some good traces of minerals and brown rice/Quinoa do not?

Is Molybdenum deficiency the one in particular that, I need to watch out because of going wheat free? Or are there minerals and vitamins too that I am at risk of.

The only supplements I am currently taking are B12 sublinguals and Vitamin D

[Skylark]

Gluten-free diets that rely heavily on processed gluten-free breads are the big problem. Most white flour in the US is enriched with B-vitamins and iron and wheat flour has some fiber and protein. Highly refined starches like cornstarch or tapioca starch have very little protein, fiber, vitamins, or minerals. Potato starch, bean flours, and wholegrain flours like brown rice, teff, or buckwheat flour are much more nourishing. Here's some info on gluten-free flours that will help you understand.

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Legumes are naturally rich in molybdenum and iron, so you can eat those to balance the missing wheat. If you are eating a lot of fruit and vegetables you should get plenty of B-vitamins.

Maybe someone else can help with supplement recommendations. The supplement I take is one specific for mental health. It makes me queasy on an empty stomach but I tolerate it fine with meals.

[beachbirdie]

Also in a month, I will pester my doctor to repeat the thyroid probably the T3/t4 test.

Hi Sanjoseguy...I grew up there! Third-generation Californian, though elsewhere now.

Anyway, good that you are asking for the T3/T4 tests. Make sure they are the "free" and not "total" measurements. TSH alone does not indicate hyperthyroid, it is the excess of thyroid hormone that truly tells if you are hyper (though hyper would be the assumption since you have Graves in the family).

My TSH runs .003 (suppressed by natural thyroid) and I'm nowhere near hyper.

[Sanjoseguy]

I was waiting to get my T3/T4 before I post again. Here they are

Free T3 = 3.02 (The normal range being 2.3

[UKGail]

Hi Sanjoseguy

Sorry to say, your tiredness is probably due to your body being in recovery mode. I was also deathly tired and weak for the first two months or so, although I was feeling much better otherwise. Even 6 months on, fatigue is still an issue for me, although my recovery has been slower than many experience because I had been unwell for a long time.

You could also be needing supplements, still B12 - a month is not long to supplement if you were really low initially, folate, iron, D, and others. Probiotics usually help too. My fatigue eased noticeably when I started taking B12, D and probiotics.

Is your stomach etc feeling better on the gluten free diet? If it is, then the rest should follow in time. Had you thought about asking your doctor to run tests for your vitamin levels to see if you can pinpoint a particular culprit? Someone here found their folate was very low even though their B12 was fine, and this was a signficant factor in their fatigue.

[IrishHeart]

Had you thought about asking your doctor to run tests for your vitamin levels to see if you can pinpoint a particular culprit? Someone here found their folate was very low even though their B12 was fine, and this was a signficant factor in their fatigue.

That may have been me. Despite getting my B-12 up high, I was flagging BIG TIME for months after DX. I was just dragging myself around, which was weird because I had been very wired, jittery, full of nervous energy and a total insomniac on gluten/ before DX.

I read about Folate levels being tanked in celiac and asked the doc for a blood test. There it was.

Prescription-strength Folic acid for 3 months--and it came up--- and my fatigue resolved.

[basilicious]

That may have been me. Despite getting my B-12 up high, I was flagging BIG TIME for months after DX. I was just dragging myself around, which was weird because I had been very wired, jittery, full of nervous energy and a total insomniac on gluten/ before DX.

I read about Folate levels being tanked in celiac and asked the doc for a blood test. There it was.

Prescription-strength Folic acid for 3 months--and it came up--- and my fatigue resolved.

IrishHeart, I am going through that wild gear shift right now. Good to know it's not just me. Before I pinpointed my gluten issues, I felt like a hummingbird -- plenty of energy, but increasingly nervous, and had unexplained insomnia; now post-gluten, I've been weighed down by some unexplained fatigue, but it varies. Some days I feel like my old self, but other days it takes a lot of effort to do the basics. Afternoon slumps have definitely been much worse.

They tested my B12, folate and thiamine levels last week; B12 was normal but they'll let me know the values and other results tomorrow. Wonder if folate will be low... I don't need to feel like a hummingbird again, but I'd like to avoid feeling like a sloth. (Though at least they do seem happy.)

[IrishHeart]

IrishHeart, I am going through that wild gear shift right now. Good to know it's not just me. Before I pinpointed my gluten issues, I felt like a hummingbird -- plenty of energy, but increasingly nervous, and had unexplained insomnia; now post-gluten, I've been weighed down by some unexplained fatigue, but it varies. Some days I feel like my old self, but other days it takes a lot of effort to do the basics. Afternoon slumps have definitely been much worse.

They tested my B12, folate and thiamine levels last week; B12 was normal but they'll let me know the values and other results tomorrow. Wonder if folate will be low... I don't need to feel like a hummingbird again, but I'd like to avoid feeling like a sloth. (Though at least they do seem happy.)

sloths are happy little things, as are Hummingbirds, but feeling like we can't even move because of exhaustion--or that sudden, inexplicable sleepy/ dopey head? That is just not right. I felt like crying from the fatigue. And that nervous nelly act??--just horrible. I kept saying to hubs WTF?? I DO NOT FEEL like ME anymore.

Honestly, I was all of the 7 dwarves on gluten/from celiac, now that I think about it

Really, I was Sleepy, Dopey, Happy (if his name was really "manic"), Doc (because I was working so hard to figure this out) Bashful (which is not my personality at all, but I became anxious and withdrawn), Grumpy, and Sneezy.

I was also their cousins: Itchy, Bitchy, Weepy, Barfy, Achy, Crampy, Baldy (I lost most of my hair) and Bloaty.

I could go on and on...

[Sanjoseguy]

Thanks again everybody.

My folate when measured on 7th March was Folic Acid (Folate): 16.2

This is supposed to be good. May be it has come down recently. I am not sure.

I am taking D supplement already, i was quite low on it.

May be my fatigue is a combination of gluten withdrawal and the B12 supplements slowly kicking back into the system.