Just have anemia, do I need to be gluten-free?

[kam43 0]

I have been strictly following the gluten-free diet for nearly 7 months now following my Celiac diagnosis in Jan. Prior to diagnosis I struggled with years of unexplained muscle pain and joint issues but no digestive issues. Since going gluten-free, my pain issues have improved but I've got a whole host of new symptoms, chronic fatigue the worst among them. I have already eliminated dairy and corn and try to consume smallest possible amounts of soy (usually in a processed product, such as a KIND bar, although I try to make 98% or more of my food from scratch). So in researching possible causes for ongoing fatigue, I've seen a lot about both Low FODMAP and SCD.

I did do a course of antibiotics for suspected bacterial overgrowth (diagnosed through symptoms, no breath test) that produced 0 results.

I'd so appreciate hearing experiences from folks who have tried both Low FODMAP and SCD. I already ate a very healthy/balanced diet prior to going gluten-free but, honestly, life without brown rice seems pretty sad. And, of course, any other suggestions that might help improve energy are welcome (although, that said, I'm already taking B vits, D and liquid iron but I'm game to add more to the routine if that might do the trick)!

[carolynmay 8]

I have been strictly following the gluten-free diet for nearly 7 months now following my Celiac diagnosis in Jan. Prior to diagnosis I struggled with years of unexplained muscle pain and joint issues but no digestive issues. Since going gluten-free, my pain issues have improved but I've got a whole host of new symptoms, chronic fatigue the worst among them. I have already eliminated dairy and corn and try to consume smallest possible amounts of soy (usually in a processed product, such as a KIND bar, although I try to make 98% or more of my food from scratch). So in researching possible causes for ongoing fatigue, I've seen a lot about both Low FODMAP and SCD.

I did do a course of antibiotics for suspected bacterial overgrowth (diagnosed through symptoms, no breath test) that produced 0 results.

I'd so appreciate hearing experiences from folks who have tried both Low FODMAP and SCD. I already ate a very healthy/balanced diet prior to going gluten-free but, honestly, life without brown rice seems pretty sad. And, of course, any other suggestions that might help improve energy are welcome (although, that said, I'm already taking B vits, D and liquid iron but I'm game to add more to the routine if that might do the trick)!

Hi there - I haven't tried both, but I did do the SCD for a year, and then a few months later I'm back on it again as I realised it was actually helping my stomach.

I have to admit - I don't feel great on the SCD - I think I am a big "carb" person, and have also recently had thyroid blood tests showing that I am right at the bottom of the "normal" scale, which a low carb diet is not thought to help. Am about to do an adrenal test as well to see if that might be an underlying problem. So I tend to feel pretty tired and constantly crave starchy food - which I then of course can't let myself have, other than bananas, dates, stewed apple and the like. And I think they then make my blood sugar rocket unfortunately.

So I would say, it's definitely helping my digestion - and when I tried to add back in the more starchy vegetables like yams and sweet potatoes, things took a turn for the worse, but I'm not sure it helps me at least with the fatigue and carb craving.

It's a tricky one isn't it. Have you had your thyroid tested? And adrenals? The other thing I am wondering about is that I am apparently very allergic to nickel, and I'm realising that on the SCD a heck of a lot of the "staples" are high nickel foods - ie. nuts, pulses (soaked etc), green veg etc.

Good luck with things, Carolyn

[kam43 0]

Thanks for the reply, Carolyn. I have done thyroid and adrenal testing. My doc thinks that I might be suffering from low thyroid (based on T3 and T4 results, my TSH is borderline) so I did try dessicated thyroid but within just a couple of weeks on low doses I was feeling dramatically worse, with regard to the fatigue. My adrenal test came back normal and now I am in the process of relocating to a new state and so don't want to try starting up thyroid meds again until I have a new doctor and, honestly, a second opinion on that.

I've also started looking at the Paleo diet, thinking that perhaps removing grains altogether could be the answer. The kick is that all of these options make sense intellectually so it's just hard to know which to give a go to first. Especially since I'm not wanting help in the digestive area -- I just want to feel alert for a change.

[carolynmay 8]

Thanks for the reply, Carolyn. I have done thyroid and adrenal testing. My doc thinks that I might be suffering from low thyroid (based on T3 and T4 results, my TSH is borderline) so I did try dessicated thyroid but within just a couple of weeks on low doses I was feeling dramatically worse, with regard to the fatigue. My adrenal test came back normal and now I am in the process of relocating to a new state and so don't want to try starting up thyroid meds again until I have a new doctor and, honestly, a second opinion on that.

I've also started looking at the Paleo diet, thinking that perhaps removing grains altogether could be the answer. The kick is that all of these options make sense intellectually so it's just hard to know which to give a go to first. Especially since I'm not wanting help in the digestive area -- I just want to feel alert for a change.

I had significant improvement in my villi after the year on the SCD (having had miinimal improvement over the previous 4 years on a standard gluten-free diet - albeit a very strict one), so I do think grain-free can help. I still don't know if this is because it cuts out cross contamination or there may be a problem at least for some people with other grains.

It sounds like your thyroid may need some help but can totally understand waiting until you have someone you trust to deal with it. Have you had heavy metal toxicity checked? Mercury? Nickel?

Also, did they check your vitamin B12 and vitamin D levels? I get vitamin B12 injections quarterly, even though my blood results are now actually fairly high (they weren't before I started getting the injections - they were borderline low). I also obsessively get as much sun as I can (difficult in the UK!) to help keep my vitamin D levels up. The B12 injections made a huge difference to me in terms of energy levels and mental well-being, and I still notice when I am due one now, even though the blood results are quite high as I say.

[Newbee 9]

Wow Carolynmay. Your experience sounds very similar to me. I had a very similar experience with SCD also have realized I have a nickel allergy (figured out that's why my watch was giving me a rash). I didn't realize nickel was in those food you mentioned. Maybe that's why I have problems with them.

I also am/was a carboholic. That's what I found the most difficult thing with SCD until I started eating huge quantities of cheese. I find that filling although I wonder about the long term health of doing this. Digestively I do feel better.

[Newbee 9]

Carolynmay - I meant to ask, did you have another endoscoopy after doing SCD or how do you know the villi are better? Just curious. I hope my villi are healing on the diet.

[carolynmay 8]

Hi Newbee - yes, I did have an endoscopy after about 1 year on the SCD, which showed normal villi height and only slightly raised intra-epitheial lymphocytes - ie back to Marsh stage 1. I was starting from complete villous atrophy on diagnosis, but after even 4 - 5 years on a standard gluten free diet with all the usual precautions, not eating out etc etc, there was only "slight improvement" to the villi before doing SCD.

How interesting to hear you also have a nickel allergy. I wonder whether this predisposes to celiac disease or whether the "leaky gut" phenomenon means you develop allergies to metals and the like.

I am going to try having more coriander / cilantro as that is supposed to help chelate nickel. I have a Melisa blood test result which shows I am highly allergic to it, and not really to other metals.

I am also going to try and reduce the nuts and pulses but it gets to the point where there's nothing left! SAdly, although I have really tried, I am still completely dairy intolerant - even goat butter ghee for goodness' sake! Good that you can fill up on dairy!

Nickel is very prevalent in "wholegrains" interestingly. I wonder how many celiacs develop the disesase if only eating refined grains. Just curious questions!

Best wishes, Carolyn

[Newbee 9]

Carolynmay, how wonderful it is to hear how well and quickly you have healed on SCD!! It gives me hope. I'd read medical journal articles showing the closer you are to complete villous atrophy the less you tended to heal. My initial biopsy showed subtotal villous atrophy (Marsh stage 3B). My biggest concern is healing the intestines. I figure if you can't heal how are you ever going to absorb nutrients normally.

My nickel allergy showed up at the same time I got diagnosed with carpal tunnel syndrome (also related to celiac). I think this was when my body really started to break down. And still it took several years after that before I got diagnosed with celiac (only because I asked my doctor to give me the celiac blood test). The doctor didn't help diagnose the nickel allergy either, just gave me a cream to put on it. The only thing that made the rash go away for good was stopping putting things around my wrist that contained nickel.

Good to hear about the cilantro/coriander. I'll have to try that to.

I've stopped eating nuts altogether when I figured out they were bothering me. I'm hoping I can eat them at some point. I'd be much happier on the SCD diet if I could make some of the baked goods that use almond flour. Really cheese is the only dairy product I'm consuming right now. I tried the homemade yogurt but I don't think I was tolerating it very well. Hopefully that will change eventually.

Good luck with your diet! Sounds like great things are happening.