Waiting For My Test Results

[cookiestastegood]

Last summer, it was discovered I had developed an anemia. Initially, my doctor framed the situation in grim terms -- I was a young male with anemia and anemia in young men is rare. I eat a regular diet and had not recently donated or lost any blood. He sent me to a hematologist who works in oncology. The hematologist reviewed my blood work and ordered iron tests. They showed I was severely iron deficient. I told her I run 50 miles a week, but was told that wouldn't be why I was iron deficient. She put me on 130mg of elemental iron per day and sent me back to my primary care physician.  He decided to take a wait and see approach and after a few weeks of taking the iron supplement, I began feeling better. At 3 months, my hematocrit and hemoglobin had shot up. I knew it, too. I felt fantastic. It seemed to be the end of the story.

 

Unfortunately, that good feeling didn't last. Fatigue began to return. I would go in for more blood tests, but my CBC and iron levels looked normal. At 9 months, the doctors told me I could stop taking the iron supplement. I did, but began to feel progressively worse. After a couple months, I restarted the iron supplement. At my most recent blood work, my levels were still normal, but had uniformly fallen. My doctor has now told me to take 65 mg of elemental iron daily to hold my levels steady.

 

I also recently began having bowel disturbances. I do not typically eat a lot of bread, pasta, or cereal and began noticing the two events seemed correlated. I mentioned this to my doctor on Monday and he ordered blood tests for celiac, which are pending. Also, I'm on an anti-depressant.

 

Has anyone else had iron deficiency anemia, that responded to oral iron, who was then diagnosed with celiac? I don't have other symptoms of malabsorption. I had b12 and folate tested and they were fine. I don't have any of the other symptoms of celiac that seem commonplace. I have no rashes. I haven't had excessive diarrhea, though have had loose and pale stools. Recently, they did seem correlated to when I would eat bread or cereal.

 

Still, I don't think I have celiac. I think the iron deficiency comes from my running, even though the hematologist said it wasn't. I'm interested in knowing if anyone else had iron deficiency as their primary symptom and was then diagnosed with celiac.

 

I should get my test results back next week.

[GF Lover]

Last summer, it was discovered I had developed an anemia. Initially, my doctor framed the situation in grim terms -- I was a young male with anemia and anemia in young men is rare. I eat a regular diet and had not recently donated or lost any blood. He sent me to a hematologist who works in oncology. The hematologist reviewed my blood work and ordered iron tests. They showed I was severely iron deficient. I told her I run 50 miles a week, but was told that wouldn't be why I was iron deficient. She put me on 130mg of elemental iron per day and sent me back to my primary care physician.  He decided to take a wait and see approach and after a few weeks of taking the iron supplement, I began feeling better. At 3 months, my hematocrit and hemoglobin had shot up. I knew it, too. I felt fantastic. It seemed to be the end of the story.

 

Unfortunately, that good feeling didn't last. Fatigue began to return. I would go in for more blood tests, but my CBC and iron levels looked normal. At 9 months, the doctors told me I could stop taking the iron supplement. I did, but began to feel progressively worse. After a couple months, I restarted the iron supplement. At my most recent blood work, my levels were still normal, but had uniformly fallen. My doctor has now told me to take 65 mg of elemental iron daily to hold my levels steady.

 

I also recently began having bowel disturbances. I do not typically eat a lot of bread, pasta, or cereal and began noticing the two events seemed correlated. I mentioned this to my doctor on Monday and he ordered blood tests for celiac, which are pending. Also, I'm on an anti-depressant.

 

Has anyone else had iron deficiency anemia, that responded to oral iron, who was then diagnosed with celiac? I don't have other symptoms of malabsorption. I had b12 and folate tested and they were fine. I don't have any of the other symptoms of celiac that seem commonplace. I have no rashes. I haven't had excessive diarrhea, though have had loose and pale stools. Recently, they did seem correlated to when I would eat bread or cereal.

 

Still, I don't think I have celiac. I think the iron deficiency comes from my running, even though the hematologist said it wasn't. I'm interested in knowing if anyone else had iron deficiency as their primary symptom and was then diagnosed with celiac.

 

I should get my test results back next week.

 

Hi Cookies... and Welcome to the Forum.

 

Iron Deficiency/Anemia is very common to undiagnosed Celiacs.  I agree with your Doctor that running would not cause this.  Some Celiacs have no symptoms, very few symptoms, or a boat load of symptoms.  Depression at any level is also associated with Celiac.  Here is a list of symptoms.

 

Open Original Shared Link

 

Here is information for proper testing.

 

Open Original Shared Link

 

Keep eating gluten until all testing is complete, including Endoscope.  

 

Colleen

[nvsmom]

Welcome to the board.

 

It's good that you are getting testing. Better safe than sorry since you do have symptoms of the disease.  You symptoms are pretty mild but that happens in some, and the symptoms often get worse as the disease progresses. When I was in my mid 20's, I was running 3-15 miles per day, lifting weights, and working full time, and my symptoms were some stomach aches, constipation, some headaches, and occasionally my first bouts with arthritis.  I had normal blood and nutrient levels.  15 years later, my blood and nutrient levels were still fine, I had migraines and stomach aches, but the worst is that my arthritis progressed to the point were I can't run or lift with any consistency anymore... I wish I had been tested and treated decades earlier, so I'm glad you are getting checked.

 

Make sure they run the full celiac panel.  These tests are not 100% sensitive for celiac disease, and miss about 20% of celiacs. This is the panel:

tTG IgA and tTG IgG

DGP IgA and DGP IgG

EMA IgA - tends to detect more advanced damage

total serum IgA - a control test

AGA IgA and AGA IgG - older and less reliable tests

 

Make sure you continue to eat gluten (1-2 slices of bread per day or the equivalent for 8-12 weeks prior to testing) if testing is not complete.  

 

Let us know your test results. Good luck!

[cyclinglady]

I was diagnosed last year. Went for a routine colonoscopy consult. Doc suspected celiac because I was anemic. Have one genetic anemia but was iron deficient as well. Tested positive on both blood tests and biopsy. Had severe intestinal damage. Suffered two broken vertebrae a few months later doing nothing!

I had no idea that I had issues with gluten as I did not have intestinal issues (have always been allergic to milk, eggs and nuts like others in my family).

The good news is that I am healing well and back on my bike after a year of eating gluten free. I also run and I do not think that heal strikes could cause severe anemia. I read up on it, but my anemia just seemed too severe and did not respond to iron well. Hemoglobin would increase with iron supplements( and drop after ceasing them), and I could never get high enough ferritin levels. Yep, it was celiac that caused my iron deficiency. Taking no iron now. I am absorbing it well from just my normal diet.

Best of luck to you! Keep us posted!

[cookiestastegood]

Thanks for the replies. 

 

I was looking over the symptoms that gluten-free Lover posted and there is one other data point that might be relevant. I've had a very large drop in my cholesterol. In 2007, my cholesterol was 192 with an HDL of 55. Last year, my cholesterol was 127 with an HDL of 41. I thought that drop was unusual at the time and I raised the issue with my doctor, but he said my cholesterol was good. I didn't think it was good the LDL had dropped so much. It was barely above what's considered a risk factor for heart disease (<40). I haven't had my cholesterol tested again, so I don't know where it's at now.

 

The experience of cyclinglady does sound a bit like mine. Do all of you have relatives with celiacs? No one in my family has celiacs that I know of. There are many other autoimmune disorders in my family tree, however. 

 

Also, I didn't know the concept of a "gluten challenge" before reading this message board. You're supposed to eat the equivalent of 2 pieces of bread per day? I'm not sure I eat that much wheat. I know I don't eat that much bread. I often buy gluten free snacks because I like the taste. I eat a lot of white rice, too. My primary source of wheat probably comes from sweets, usually cookies. I have a sweet tooth. 

[LauraTX]

I was diagnosed pretty much by accident after having an endoscopy done for stomach pain.  Eventually all the bloodwork also pointed to Celiac disease,   I never did have any of the major GI symptoms, however once going gluten-free after diagnosis my unexplained anemia cleared up.  Not all Celiacs get Diarrhea and such upon gluten exposure.  I am what is sometimes called a "Silent Celiac" who does not get outward GI symptoms upon accidental consumption of gluten, but I do have Celiac disease and it does cause intestinal damage.   Let us know what your testing shows.

[cookiestastegood]

That's interesting, Laura. I did not know of the concept of the "silent celiac."

 

I realize my circumstance is unusual. The 65mg of elemental iron I must take is 6 times the recommended intake for a male my age. That's in addition to whatever iron I consume in my diet. I've tracked my dietary iron intake and, theoretically, I should get more than enough. Combined together, it's a lot of iron to be consuming daily. As mentioned though, I am very physically active.

 

Also of note, my mom does have rheumatoid arthritis. She contracted that in her early 30's, roughly the same age I am now. It is very severe and she is disabled. Interestingly, she's never tested positive for rheumatoid arthritis. Because the outward physical deformities have been so severe, it's just assumed she has it. She did not test positive for celiac, either. 

[nvsmom]

Autoimmune diseases like RA, lupus, diabetes (T1), hashimotos among others, are often found in the families of celiacs, or in celiacs too (many of us have a few issues).  Having AI diseases in the family is a good reason to keep an eye on celiac symptoms. I have family members with celiac disease, I also have some with thyroid problems (seems like half of them) and RA too. I have celiac disease, hashi's, and an autoimmune blood disease (ITP) which caused some serious anemia when I was in my late teens(it's not common).

 

Low cholesterol is common here too. If you search the forum for it you'll probably find a few stories.  Mine is low to off the normal range low... Low enough that one doctor has tried to raise it, my old doctor just congratulated me for eating right... yet I was an undiagnosed celiac eating gluten at the time.  LOL

 

The average diet has 10-40g of gluten per day in it.  A slice of bread is just under 5g and a (small) serving of pasta is over 6g.  A gluten challenge needs about 5-10g of gluten per day, which is technically less than the average person.  If you ate enough cookies, you should have been fine for the tests.  

[cookiestastegood]

I'm not sure if I was eating that much gluten. I didn't eat much bread, pasta or cereal in the days immediately preceding my blood test. That's because there was one recent 3 day stretch where I did and I ended up with substantial bowel disturbance. It was the first time I had ever correlated the 2 events. I've known since last year that celiacs should be considered in anemia of unknown origin, but I didn't think I had the symptoms. That made me reconsider.

 

At my appointment on Monday, my doctor told me to avoid grains, which I've been doing. Tonight at the gym, I began having acid reflux and the feeling I could have diarrhea.

 

I thought to myself — OK, these recent bowel disturbances can't be related to gluten because I haven't been eating any.

 

Then, as I was thinking over what I had ate, it dawned on me -- the sushi I ate for dinner had tempura in it and that means it was fried.

 

Oops.

 

I did end up having a bowel disturbance, but maybe the sushi was just bad... right? That's typically what I've thought in the past when I've had such incidences. Though such events used to be few and far between. I have had more of them lately.

 

Ugh.

[cyclinglady]

Your doctor was wrong. Keep eating gluten until all testing is completed. That includes a complete blood panel and a biopsy. My blood test was barely positive, but my intestinal damage was severe. My husband has been gluten free for 13 years, so our household was gluten light. I still ate tons of cakes and cookies all those years though. I consumed a ridiculous amount of gluten between tests too. Kind of a farewell to gluten gesture. But I think the intestinal damage (no symptoms) were there for years.

I am the first in my family to be formally diagnosed; however, autoimmune disease runs strong (RA, Thyroiditis, lupus, etc..). My cholesterol levels were extremely low. I would get a pat on the back for those low numbers (e.g. Last total was 116 and HDL was 38). Little did I know that celiac disease was preventing me from absorbing fats, iron, calcium, etc. I now have blood glucose resistance (diabetes) but am managing well on diet. I am to get type tested at my next check up. I am a small person and am very active, so that was a shock. Genes play a huge role in determine good health.

Did you use soy sauce with your sushi? It is not just tempura that has wheat!

Research as much as you can! You are your best advocate!

[cookiestastegood]

If the blood test is positive, what is the purpose of the biopsy? Is it just to confirm the diagnosis? If my blood tests return positive and with my history of unexplained iron deficiency, I would think that'd be enough. If I were a pre-menopausal woman, it'd be different. Menstruation can easily lead to anemia. As a man, I don't menstruate. i'm not losing any blood. I don't have cancer. I'm not starving or a vegetarian. If my blood tests are positive, I don't see why I'd need an uncomfortable procedure for absolute certainty. I would imagine the likelihood of a false positive in a male with a history of unexplained iron deficiency anemia would be in the millions.

[beth01]

Some doctors won't diagnosis without the biopsy.  If you don't need an "official" diagnosis, it isn't necessary.  You don't need a prescription to eat gluten free if you think that is your problem.  Some people need that report that gives them a definitive diagnosis in writing that states they have Celiac, it's a denial thing.  Some need it for school reasons - my young daughter has it on her file at school, we don't expect the school to provide meals for her but if we did she would need a doctor to state she has Celiac.  Some need it for their families sake - some won't get the support of their families without it.

 

I opted to not have my daughter get a biopsy, sometimes I wish I would have.  Her antibody levels were really high and we really don't know how damaged her intestines are. She really never had a lot of stomach issues either, some rather odd fainting but no classic symptoms.

 

Just make sure you have good follow up care, it's a must.

[cookiestastegood]

My doctor said my test results don't show evidence of gluten antibodies, which is good. My health insurance is through Kaiser Permanente and normally I can see my test results by logging into my account online, but these aren't showing. Therefore, I don't know the exact results or what was tested. He said my results do not preclude a gluten sensitivity and that I should continue to adhere to a gluten free diet to see how I progress. He also advised I should have a short threshold for alerting him if anything is not going well.

 

I'm satisfied with that outcome. I have been seeing modest improvements to my exercise tolerance during the last week. My threshold for "normal" is high. I expect to be able to run 52 miles a week and lift weights 1-2 hours a day. That is my normal. It's a different measuring stick than for most people. I was doing that even when my hemoglobin had dropped to near single digits. When told of that last summer, my doctor said, "you must have extraordinary willpower."

 

There remains the question of how I became iron deficient and why I seem to need daily iron supplements to keep my levels stable. For now, there doesn't seem to be an easy answer. If it is tied into a larger issue, it may be a matter of waiting for the other shoe to drop to provide more clarity.

 

Thanks for all the responses.