Tentative Celiac Diagnosis But Iron Deficiency Got Worse After Going Gluten-free

[shawna67]

Hi,

I've felt very ill for years (like 15 years) only to be told by incompetent doctors that its all in my head; my symptoms have included bad bad insomnia, anxiety, weird feelings in my extremities, headaches, constipation, abdominal pain and bloating, weight gain, pain in the upper right quadrant of the abdomen, severe indigestion, nauseau, unrelenting fatigue, cognitive & memory problems, GERD, occasional bloody stools, bleeding gums, dizzyness, pimples and boils, and chronic anemia and low iron stores. After years of walking around like this with my life passing me by, a very perceptive dietician I was referred to said she strongly suspected celiac disease & proceeded to put me on a gluten-free diet. I don't think my diet is 100% gluten-free since its so hard to avoid wheat and gluten products; for example, I know for certain that my shampoo, skin care products, etc. have wheat listed as an ingredient. So, I've been on a mostly gluten-free diet for about 5 months.

I just recently had my ferritin levels and my iron saturation rate rechecked because they were both very low 6 months ago (they've been very low for over 15 years). Six months ago, the ferritin level was 5 and the iron saturation rate was 14.2 (normal is 20 to 55). I had these levels rechecked a week ago and to my horror, my ferritin level decreased to 4.0 and my iron saturation rate decreased to 9.0. My dietician said that I'm probably not getting enough iron in my diet since going gluten-free because I don't eat red meat & most wheat products, like cereal, are iron-fortified. I'm starting to wonder whether her diagnosis of celiac disease is wrong because I know for certain I've had ulcers in the past, which could be causing the abdominal problems and iron deficiency. She still suspects celiac because most of my symptoms have improved since going gluten-free; I'm actually sleeping some (though I still have some totally sleepless nights); my stomach problems have improved a lot; I don't have the weird headaches and weird sensations in my extremities anymore; and the anxiety has decreased a lot.

I have an appointment next week with the Beth Israel Deaconness Celiac Clinic in Boston. My understanding is that celiac disease is rather difficult to diagnose since many of the tests register as false negatives. Can anyone who has a celiac diagnosis tell me whether my symptoms sound like celiac disease? And what can I do about the incredibly low iron stores? Will it take a long time for them to increase since my stomach needs to repair itself from years of damage?

Any advice would be much appreciated.

Thank you.

[ravenwoodglass]

You sound very much like the dietician made the right call. The reason why you haven't seen an improvement in the iron levels is really simple and it is right here-

"I don't think my diet is 100% gluten-free since its so hard to avoid wheat and gluten products; for example, I know for certain that my shampoo, skin care products, etc. have wheat listed as an ingredient. So, I've been on a mostly gluten-free diet for about 5 months"

For you to heal you really need to be totally gluten-free, even small amounts will keep the anitbody reaction going and prevent you from healing. You need to be strict, hard as I know that is, it is worth it.

[shawna67]

Hi,

I agree that the dietician is probably really on to something; its a shame that I've been sick for the last 15 years - from my early 20s - and doctors kept dismissing my symptoms as anxiety. They were incredibly rude and bordering on abusive in their treatment of me because they couldn't figure out what was wrong with me, and neither did they try very hard. I guess thats just water under the bridge at this point. I need to focus on healing & the best way to do that is to go 100% gluten-free. I've been a little lazy about putting in the effort to go 100% gluten-free because the diagnosis is not definite yet & I've also received conflicting information regarding the ability of skin and hair care products to get into your system. But, to be on the safe side, I'm going to eliminate any product that has wheat or gluten in it & see how I do.

Thanks for the advice.

[Joni63]

I read that Celiacs should take an iron supplement. I'm not sure, but I don't eat red meat much either. I think the Celiac diet does make it tougher for you to get the proper amount of iron. Maybe someone with more knowledge can add to this information, but there are certain vitamin supplements I think are standard to take.

Anyone know?

[shawna67]

Hi Joni,

I've had low iron stores for many years and my doctors kept telling me it was of no clinical significance. Then my hair started to shed really bad; actually, it was falling out in big clumps so I went to a dermatologist who tested my iron stores; this was 8 years ago & my ferritin levels were 15, which she said were some of the lowest levels she's seen; she put me on an iron supplement which I was taking 2 times a day; I was on it for 9 months and, to my surprise, my ferritin levels didn't improve much. They went from 15 to only 25 while taking well over the RDA for iron. I was also taking l-lysine, vitamin C, and orange juice with meals at the time & my ferritin levels only budged 10 points in 9 months. I realize that it takes a while to build up the iron stores but my progress seemed to be very slow. Now, my iron stores are only 4, so something is going on with my body's inability to absorb iron. I wonder if damage from celiac could cause this problem, and whether its even worthwhile to start iron supplementation until the damage to my stomach is repaired? Any thoughts on this question?

Shawna

I read that Celiacs should take an iron supplement. I'm not sure, but I don't eat red meat much either. I think the Celiac diet does make it tougher for you to get the proper amount of iron. Maybe someone with more knowledge can add to this information, but there are certain vitamin supplements I think are standard to take.

Anyone know?

[DingoGirl]

Hi Shawna

Doctors can be really misinformed and, well, stupid. I"m so sorry you suffered for all those years......many of us here - probably MOST - are in the same boat.

My ferritin level at time of diagnosis was less than 3, but at the six-month mark it was 6, and now, two years later, I am sure it is more than double that (I"ll be tested soon). I have never felt so fabulous. And I had a lifetime of terrible depression, anxiety, insomnia, eveyrthing you've described. I am 46, and I started antidepressants at the age of around 20. [bTW my hair started growing back right away - it had been falling out in handfuls - and now, it's actually thicker than it's ever been.]

You definitely should take an iron supplement, and a good multivitamin. And....really scrutinize EVERYTHING for gluten - you can't cheat or let any slip by, or your gut won't heal and you'll still have malabsorption.

Also, since you don't eat meat, you'll really need to increase your leafy greens, almonds, etc., other things high in iron - you can google that and see what comes up. Your approach to foods for a great while should be to eat things that are naturally gluten-free and in their purest form - not as much processed and chemical-containing, as artificial ingredients etc. are rather a deterrent to healing.

This is a bit harder though, since you don't eat meat - - I LOVE meat and probably eat it at least twice a week. Also chicken and fish.....

Let us know how it goes.

[Joni63]

Hi Joni,

I've had low iron stores for many years and my doctors kept telling me it was of no clinical significance. Then my hair started to shed really bad; actually, it was falling out in big clumps so I went to a dermatologist who tested my iron stores; this was 8 years ago & my ferritin levels were 15, which she said were some of the lowest levels she's seen; she put me on an iron supplement which I was taking 2 times a day; I was on it for 9 months and, to my surprise, my ferritin levels didn't improve much. They went from 15 to only 25 while taking well over the RDA for iron. I was also taking l-lysine, vitamin C, and orange juice with meals at the time & my ferritin levels only budged 10 points in 9 months. I realize that it takes a while to build up the iron stores but my progress seemed to be very slow. Now, my iron stores are only 4, so something is going on with my body's inability to absorb iron. I wonder if damage from celiac could cause this problem, and whether its even worthwhile to start iron supplementation until the damage to my stomach is repaired? Any thoughts on this question?

Shawna

Did you stop taking the iron supplement? I think if I were in your situation I would definately go back on the iron. It might not have been working as quickly as you wanted, but it did seem to be working for you. And since your iron stores were so low to begin with it probably will take a long time for it to build back up in your system.

[shawna67]

Hi Susie,

Thanks for the reply. I agree that doctors can be terribly misinformed and ignorant. I can't even begin to tell you how unprofessional they were towards me. It got to the point where they were verbally abusive because they couldn't figure out what was going on & neither did they try very hard.

It gives me some hope to know that you're doing so much better after diagnosis. I feel many times like my health will never improve so its good to know that there's light at the end of the tunnel. In the last 15 years, I've gone from a young, healthy, energetic woman in her mid-twenties who loved to travel to a 40 year old disabled woman who barely has the stamina to leave the house most days. And I teach full-time at a university! I can barely hold down my job. Since I didn't have a celiac diagnosis all these years, I've had to drag myself into work exhausted, anxious, weak, and on no sleep only to be told by doctors that everything was in my head & they weren't going to write me a sick note so I could apply for sick leave. Its been an absolute nightmare!

I'm just relieved to know there's actually a diagnosis for what I've been experiencing all these years. Now, I'm going to work very hard towards recovery even if that includes eating red meat, which I haven't had in years. I'll take an iron supplement too & be more careful about my diet to make sure there's no gluten getting in there.

I'll let you know how I make out. Thanks for the encouragement.

Shawna

Doctors can be really misinformed and, well, stupid. I"m so sorry you suffered for all those years......many of us here - probably MOST - are in the same boat.

My ferritin level at time of diagnosis was less than 3, but at the six-month mark it was 6, and now, two years later, I am sure it is more than double that (I"ll be tested soon). I have never felt so fabulous. And I had a lifetime of terrible depression, anxiety, insomnia, eveyrthing you've described. I am 46, and I started antidepressants at the age of around 20. [bTW my hair started growing back right away - it had been falling out in handfuls - and now, it's actually thicker than it's ever been.]

You definitely should take an iron supplement, and a good multivitamin. And....really scrutinize EVERYTHING for gluten - you can't cheat or let any slip by, or your gut won't heal and you'll still have malabsorption.

Also, since you don't eat meat, you'll really need to increase your leafy greens, almonds, etc., other things high in iron - you can google that and see what comes up. Your approach to foods for a great while should be to eat things that are naturally gluten-free and in their purest form - not as much processed and chemical-containing, as artificial ingredients etc. are rather a deterrent to healing.

This is a bit harder though, since you don't eat meat - - I LOVE meat and probably eat it at least twice a week. Also chicken and fish.....

Let us know how it goes.