Low ferritin low hemoglobin celiac three years ?

[rozee1972]

I have posted before but at my wits end. I was diagnosed celiac three years ago due to very low ferritin and hemoglobin. I began gluten free diet and iron supplements and my levels were back to normal. Dr took me off iron and I continued gluten free. Past labs have shown a steady decline in my hemoglobin and ferritin. Yesterday dr told me to start iron pills again, re test labs before my appointment with her in November and consult with my Gastro doc. I had my upper endoscopy just three months ago and a colonoscopy two years ago- both normal. My labs were also all normal except for hemoglobin and ferritin levels - here in US hemoglobin should be 11-15 mine was 11.6; ferritin should be 15-150 mine was 12. White blood cells, red blood cells, platelets , everything else normal .

I am confused. Does celiac disease mean I will always have to contend with lower iron levels? Perhaps take iron consistency?

I am also on Medicines that I have read can inhibit iron absorption- omeprazole, metformin, and levothyroxine. The knowledge base of my drs seems to be limited and I am scared, frustrated and confused.

I take daily a multivitamin, vitamin C, D, and E. I recently added B in case I am deficient there. Please shed some light on this issue. I am at the end of my rope and I need help.

Could this simply be just iron deficiency anemia caused by the aforementioned?

[Hidden]

Hello rozee1972 firstly poor you and meds can indeed inhibit iron absorption as can gluten. When I was first diagnosed I made a quick recovery but went anaemic again because I introduced certain GF foods that had allowed levels of gluten in them and my Dr thought I had IBS! So I stopped eating codex products and only eat naturally GF foods and avoid all the allowed levels go gluten in codex wheat malted breakfast cereals malt vinegar and oats.

And I've earned a badge as a blood donor since and I'm a diagnosed coeliac.

The UK gluten free diet isn't gluten free enough for me and many like me.

If your villi hasn't recovered you could also be having a reaction lactose in dairy as the enzyme lactate that breaks down lactose is made a the tip of our villi hence those with upset stomachs often temporarily avoid dairy.

So good luck and just remember that you are not alone as many coeliac suffer ongoing issues.

Jerry. 😊

[rozee1972 in reply to Hidden]

Thanks, Jerry. Just for clarification, what is codex?

Also, my colonoscopy two years ago showed my intestines had healed and I just had an upper endoscopy in July and it was all normal.

I guess my frustration lies in the fact that this is a constant battle and I don’t really have the answers I’m looking for.

I guess we just have to advocate for ourselves bc quite honestly I have lost a lot of faith in my drs’ abilities to connect all the dots and fully educate themselves on this all -encompassing disease.

[Hidden in reply to rozee1972]

Hi rozee1972 codex is food with wheat starch malt and oats which have to be tested for cross contamination and they have two be below 20 ppm to be classed as gluten free.

Many of us prefer a totally gluten free diet hence the popularity of the FODMAP diet.

I'm glad that your villi has healed that's one consolation so good luck with getting more referrals from your Dr as it is frustrating for you.

[Hil101]

Hello Rozee,

It might be worth trying vitamin B12 because this is essential in metabolising iron and people who don’t properly absorb B12 can get pernicious anaemia. To make sure it’s absorbed, you need to take tiny methylcobalamin pills which you dissolve slowly under the tongue (not lozenges). Solgar do a good one. Or sublingual B12 liquid such as Biocare. This bypasses the digestive system so should be more effective. You could also look at the Pernicious Anaemia Society’s website (PAS) for further info. Hope this helps

[Hidden]

I've read bad things about omeprazole generally and think that is one medicine that is over-presribed to little or no effect, but can lead to longterm damage. I would avoid.

As to the other two meds - I'm assuming you have thyroid issues and diabetes, so those you need.

How about a meds check on the omeprazole and seeing if that is one less thing you can do without?

[Hidden]

You will only have low iron with coeliac if you have actual villi damage. If villi normal then not coeliac stopping the iron absorption. The pharmaceuticals could be the issue as you say. Tea stops iron absorption as do dairy products if you take them with supplements. Also need vit C for iron absorption. I still have damage from coeliac and my iron levels are normal. Perhaps a functional medicine expert would be helpful or a dietician?