How quickly does ferritin drop in untreated celiac?

[Breezy1]

Hi! I haven’t posted in awhile, still haven’t gotten a diagnosis but I’ve finally gone in to see my family doctor and hoping to get proper testing done. 

Awhile back I had some regular blood work done and my ferritin was low, at 27 (lab range said under 50 was probable iron deficiency) and one celiac test ttg iga which was negative. 

Recently I went to my doctor and he ordered a complete blood count as well as ferritin, and thyroid test. My hemoglobin was normal, but my ferritin has dropped to 18, and my thyroid dropped as well but is still in normal range. 

So, I’m wondering if my ferritin dropping from 27 to 18 in roughly 7 months is a big drop? I’m still having all my symptoms, migraines, stomach aches, bloating, diarrhea, dizziness, constant heartburn, muscle/joint pain, memory problems, anxiety, depression, but some of them have gotten worse over the last little bit. 

I see my doctor to go over my results in a week and plan on asking for the celiac panel, but I was just wondering if anyone here had ferritin levels drop like this before diagnosis, or would they drop faster? I eat a lot of foods that are high in iron so I don’t understand what else the problem could be!

[vvicin02]

I was told eating all the iron you want will not really help much if your body cannot absorb the iron for storage. My ferritin is at 17 and tried to consume meat and other high iron foods with no luck.  I think it is a good idea for additional testing for Celiac. By all your symptoms it sure sounds like Celiac. I know it is frustrating. In my case my Doc 5 years ago (new Doc now) just ignore the low ferritin and elevated liver enzyme results. Good to hear you are on it. More blood work and endoscopy probably would be useful.

[Posterboy]

Breezy1,

Jherm21 had a similar question(s) about Iron.

vvicin02 is right.

36 minutes ago, vvicin02 said:

I was told eating all the iron you want will not really help much if your body cannot absorb the iron for storage.

See this recent thread in another topic about Iron.  You might be also low in B-12 too and/or Vitamin D and will want to be tested for these deficiencies.

Also try taking 200mg Magnesium Cirate with meals to help with any fatigue issues you might be having from your low iron levels.

I hope this is helpful but it is not medical advice.

Good luck on your continued journey.

2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things” this included.

Posterboy by the Grace of God,

[Breezy1]

Thank you for the replies!

Thats awful your old doctor ignored your abnormal results vvicin02. So did it take 5 years for you to get diagnosed? That’s what I’m worried of, that my doctor may just try to treat my symptoms but not find the cause. He’s a great doctor but I don’t know how much he knows about celiac as I’ve never brought it up to him yet. I have a hard time advocating for myself, so when a doctor shrugs off my concerns I find it hard to say much. Hopefully he takes me seriously when I go in this week! 

[vvicin02]

Yes Breezy1 - my old Doctor never even considered Celiac as the cause of my low ferritin. He talked about sending me to a hematologist but never followed up on it. To make matters worse, he had me take two more blood tests over a period of three weeks and the ferritin level stayed at 10! Unreal. I didn't think much of it. I didn't even know what Celiac Disease was at the time. I went to another Doctor two - three years later (I know I should be going more regularly) and he didn't even bother testing for ferritin. He assumed that because my iron looked good there was no need to test for ferritin.  I was lucky that my new current Doctor was concerned about my low ferritin and bloating issues. I was like you thinking that eating lots of food with iron would help. I even tried to eat a big old stake the day before testing...lol....that didn't help. I wish you the best. We shall see if in time if going Gluten Free heals the villi and allows the small intestines to absorb the iron. I will be interested how you progress.

[Breezy1]

17 hours ago, vvicin02 said:

Yes Breezy1 - my old Doctor never even considered Celiac as the cause of my low ferritin. He talked about sending me to a hematologist but never followed up on it. To make matters worse, he had me take two more blood tests over a period of three weeks and the ferritin level stayed at 10! Unreal. I didn't think much of it. I didn't even know what Celiac Disease was at the time. I went to another Doctor two - three years later (I know I should be going more regularly) and he didn't even bother testing for ferritin. He assumed that because my iron looked good there was no need to test for ferritin.  I was lucky that my new current Doctor was concerned about my low ferritin and bloating issues. I was like you thinking that eating lots of food with iron would help. I even tried to eat a big old stake the day before testing...lol....that didn't help. I wish you the best. We shall see if in time if going Gluten Free heals the villi and allows the small intestines to absorb the iron. I will be interested how you progress.

Wow! It’s amazingly sad how many doctors seem to brush off their patients symptoms and results that point to obviously something being wrong! I guess I’m lucky that my doctor wanted to check my ferritin even though my hemoglobin was normal! I can totally relate to waiting so long to see a doctor! First time I went was after my first daughter was born (4ish years ago) I had symptoms through childhood but they were so much worse after having kids. I was told not to eat fatty foods and see if it helped. And had my thyroid checked. But everything looked normal and that was that! I saw my doctor last Friday and he now wants me to have an ultrasound to check my gallbladder, and ordered blood work for celiac. I asked for the whole panel but it only says tissue transglutaminase ab. So I checked the website where I get my lab work done and turns out there’s only two tests for celiac panel... but I’ve seen on here people mention the full panel and it’s more. Maybe because I’m in Canada? 

Im glad you were able to find a doctor that’s helpful! I’ve increased foods high in iron lately but have a feeling it’s not going to do much.. lol. And now I’m developing new symptoms! Today at work I had the strangest feeling, it was like the feeling you get when you cross your eyes? Except I wasn’t doing that lol, and then felt a little dizzy with blurry vision, and if I hadn’t been able to grab onto something I would have fallen over! I had no balance. Luckily it only lasted a minute or two but after that my eyes felt weird and strained.. hasn’t happened since though. I wonder if that can be a symptom of celiac, seems like there are so many. 

Thank you! I’ll update when I get my results! 

[Breezy1]

Well I got my results in. The test that was done was tissue transglutaminase iga and my result was 0.5 and the lab range says under 12 is negative. It also states in the comments that they used a bioplex method which includes internal control to confirm iga is sufficient. So I assume that is the same as if they run a total iga, although it doesn’t tell me the results of that, just that overall the test was negative. I’ve been trying to search online for Canadian testing because I’ve seen people on here list 4-5 different tests for celiac as the whole panel, but from the website I found regarding celiac testing in my province it states this :

 

“There are two pre-screening blood tests that medical care providers order in British Columbia* that can determine whether your body makes the antibodies that are associated with celiac disease.

• tTg: IgA anti-transglutaminase antibody test
• Total Serum IgA

While these blood tests are very sensitive, they are not 100% reliable. If the tTg test is positive or the IgA test shows a deficiency, a duodenal biopsy is suggested. Collected under mild sedation, evidence of damage to the lining of the small intestine offers a definitive diagnosis of celiac disease – or can rule it out entirely.”

I find this really confusing because I was under the impression it is possible to have a negative iga test and not be deficient in iga, but still have celiac?

Also I found some information about topical steroid use possibly interfering with results? Does anyone know if that’s true? I’ve been using topical steroids for years for a rash that never completely goes away, but the steroid mildly helps with the itching! 

Im more confused than ever and don’t know what the next step should be, I thought I would ask my doctor for further testing but it looks like that’s not available here.. if anyone has some advice it would be greatly appreciated!!

 

[vvicin02]

Well last week I went in for blood work to see how my ferritin and iGa levels were progressing. I have been on a GFD going on 2 months now. I was happy to see that there was a slight increase in my ferritin. It was 17 in June and today it is now 26! It is still low but at least it appears my diet is working a little and my ferritin levels improving. I assume that my iGa numbers should be better since it appears that I absorbing iron. I hope so.