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Recent Diagnosis - Symptom Question


laluka

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laluka Rookie

A little background first. I was recently diagnosed with celiac disease via biopsy. This was after unexplained anemia. I originally went to the doctor because I was lightheaded throughout the day, particularly after eating, and quite tired. She checked my ferritin level (but not hemoglobin - I'm not sure why). My ferritin was at 5. She said that explained the symptoms and she prescribed iron. I went back 4 months later. I had stopped feeling lightheaded after 4 weeks on the iron, but it had returned about 1 week before I went to have my iron rechecked. Again, she only checked the ferritin which was at 4. I switched doctors. Three weeks later the new doctor checked my hemoglobin (it was 11 which is okay I believe), my ferritin (5) and did a CBC and screened for celiac disease. At any rate, the doctor said the lightheadedness shouldn't be caused by the iron because the hemoglobin was at an acceptable level. I am still taking the iron to try to build the ferritin up.

Anyway, this leads to my question, the doctor said that it was probably the celiac disease that was causing my lightheadedness. I have never heard of this as a symptom. Has anyone else experienced anything like this with celiac disease?

Thanks. Laura


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flagbabyds Collaborator

First of all Welcome to the board, it is very helpful and you can find some good resources.

Lightheadeness can be a symptom of celiac, there can be so many symptoms of celiac disease. And lightheadesness can be one of a very common symptom of celiac. So can anemia. A 10 hemaglobin can be pretty low, mine got down to 7 and needed blood transfusions.

I hope the lightheadesness leaves soon once you start the gluten-free diet, and I encourage you to come here as often and ask any questions.

No questions are too stupid or gross for us here!

Canadian Karen Community Regular

Hi and welcome to the board!

Yes, lightheadedness can be a symptom of celiac particularly with malabsorption issues, not only of iron, but other vitamins and minerals also. At any rate, you do have a diagnosis and your next order of business is a crash course in the world of gluten free living. There is no other place that is better to be then here for that!

Read, read, read! And ask alot of questions! We are always here to answer them, as best we can! Also, the only stupid question is the question that is not asked. Trust me, we have all been where you are right now and we know how daunting of a task it seems like at first. It will get easier though, honest!

There's a bunch of really great people here for support, so just post away!

Karen

laluka Rookie

Thank you for the responses. That is good to know. I've been worrying that the lightheadedness might be caused by something else. I feel better.

Laura

flagbabyds Collaborator

You should be fine, but get your toher vitamin levels checked so you can make sure you don't have other vitamin deficiencies that could be causing the problem.

jerseyangel Proficient

Lightheadedness was one of my first symptoms. At the time I was first tested, my hemiglobin was at 11. I could handle the lightheaded feeling then--but it was bothersome. Within 2 1/2 months, it dropped to 8. The doctor put me on iron suppliments which upset my stomach terribly. Luckily, Celiac was finally diagnosed 7 months later. After 6 months on the gluten-free diet, my level went to 14.5--the highest I have ever remembered it being. I would definately keep an eye on it :)

laluka Rookie

Patti, were you able to stop taking the iron then? I hate taking it and am hoping I'll be able to stop eventually with the gluten free diet.

Laura


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Rusla Enthusiast

Welcome to the group.

Being light headed is a symptom. Also you were low in ferritin which is a sign of that also. I suggest trying the sublingual B-12, you will find it in health food stores. It goes directly into the blood stream. I could not absorb normal vitamin B-12 but the doctor at that time was not bright enough to figure out why.

jerseyangel Proficient
Patti, were you able to stop taking the iron then? I hate taking it and am hoping I'll be able to stop eventually with the gluten free diet.

Laura

Yes! Since I could not wait to stop taking the iron (because of the side effects), I began using a Centrum w/iron soon after I went gluten-free. The other reason was that I couldn't tell if the diet was helping my stomach while I was still taking the iron. The amount in the Centrum was sufficient for me once I began to absorb the iron from my foods.

tiffjake Enthusiast

Laluka, nice to meet ya! I want to scream YES to your question about lightheadedness!!! I felt lighheaded/faint so much that the doc wanted to put me on heart meds but didn't because my blood pressure was always in a safe range. It was so strange. After going gluten-free (really a gluten-free test for me) for three weeks, and then in a rebelion, eating a bowl of spag, I passed out at the mall and ended up at the ER because of it! Turns out, according to the ER doc, that my intestines had shut down, and to try to deal with the problem, my body flooded my abdomen with fluid (bloated belly) and my brain/body couldn't handle the rapid change. I don't know/remember the details of his explaination. I am not sure how much of it was a guess. But I will tell you that nothing like that has happened since I went seriously gluten free!!! No more faint feelings or strange lightheadedness. Hope my story can help you some how! God Bless!!! TiffJake

laluka Rookie

Thank you all so much. I have been eating gluten free since my diagnosis and haven't had any serious lightheadedness since, but I keep worrying that it will come back and it had been making me miserable. It is comforting to know that it is a symptom of the celiac disease.

Laura

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    • par18
      Thanks for the reply. 
    • Scott Adams
      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
    • Scott Adams
      Yes, I meant if you had celiac disease but went gluten-free before screening, your results would end up false-negative. As @trents mentioned, this can also happen when a total IGA test isn't done.
    • Seaperky
      I found at Disney springs and Disney they have specialist that when told about dietary restrictions they come and talk to you ,explain cross contamination measures tsken and work with you on choices. Its the one place I dont worry once I've explained I have celiac disease.  Thier gluten free options are awesome.
    • Churley
      Have you tried Pure Encapsulations supplements? This is a brand my doctor recommends for me. I have no issues with this brand.
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