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Recent Diagnosis - Symptom Question

laluka

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laluka Rookie
laluka
Posted

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
flagbabyds
Posted

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
Canadian Karen
Posted

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
laluka
Posted
  • Author

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
flagbabyds
Posted

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
jerseyangel
Posted

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
laluka
Posted
  • Author

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
Rusla
Posted

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
jerseyangel
Posted
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
tiffjake
Posted

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
laluka
Posted
  • Author

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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      High DGP-A with normal IGA

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      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
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      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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