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I've Been Gluten-Free For A Year, But Still Have Many "issues"

Cinnamongirl

By Cinnamongirl
in Coping with Celiac Disease

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Cinnamongirl Rookie
Cinnamongirl
Posted

I'm frustrated. I've been gluten-free for a year and thought I would be all better by now, but I'm not. I believe I was mis-diagnosed for most of my life (I'm 48), so I realize there was a lot of damage to heal. When I first went off gluten, I would alternate between "good days" and "bad days" - often three good days and then three bad days. I still had brain fog most days in the afternoons and occasionally I would have ringing in my ears. I still have unresolved anxiety and depression - but to a lesser degree than I used to. I know I have low adrenal function (I'm guessing the years of malnutrition, etc burned out my adrenals) and am wondering if this is why the anxiety has not resolved. My tolerance for stress is still very low. There is depression in my father's family so maybe there are other factors working against me?

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shopgirl Contributor
shopgirl
Posted

Have you tried eliminating other foods? Dairy? Soy? Corn?

Skylark Collaborator
Skylark
Posted

It took me a LOT of supplements until my mind cleared up and as you can tell by the timeline in my signature, it took a while. I was on the supplements for months until I got my psych issues to resolve, and that was after a full year gluten-free. I'd recommend you go onto a high-potency multivitamin, mineral, and trace element supplement along with some fish oil. It is particularly important to supplement B-complex and vitamin D but I take a lot more than that. I take a particular supplement that was recommended to me by a functional medicine Dr. called Open Original Shared Link but most people flinch at the price. I figured getting my mind back to normal was worth just about anything. My understanding is that Metagenics and Solgar also make good supplements but I haven't looked into their prices.

rosetapper23 Explorer
rosetapper23
Posted

I agree wholeheartedly with ALL of Skylark's recommendations. I know that a year seems like it would be enough time to resolve all of your issues, but I was diagnosed at 47, and it took a full 18 months before I felt halfway okay. Even so, I still had some major issues, but they resolved after a doctor recommended that I take a product containing L-Glutamine, which heals the gut. Except for residual symptoms that will probably never resolve (night blindness, difficulties clotting, and neuropathy in my feet), I feel pretty "normal" now.

Give it time....

Gluten Glutton Newbie
Gluten Glutton
Posted

The anxiety is a tough one, isn't it? I've only been gluten-free for about three months now, but I started taking a supplement for my adrenal glands at the urging of a naturopath about a month ago. I've had a great deal of stress in my life (who hasn't?) and some definite adrenal issues as a result, including a fair bit of anxiety. While a lot of the anxiety and fatigue went away with the gluten, I still needed something to help out my poor adrenals. Like Skylark suggested, supplements are key to nourishing a depleted body.

Right now I'm taking a supplement in tincture form that contains holy basil, ashwaghanda, eleuthero and a few other things. It's given me that extra boost that my body needed. Good luck to you!

cassP Contributor
cassP
Posted

I'm frustrated. I've been gluten-free for a year and thought I would be all better by now, but I'm not. I believe I was mis-diagnosed for most of my life (I'm 48), so I realize there was a lot of damage to heal. When I first went off gluten, I would alternate between "good days" and "bad days" - often three good days and then three bad days. I still had brain fog most days in the afternoons and occasionally I would have ringing in my ears. I still have unresolved anxiety and depression - but to a lesser degree than I used to. I know I have low adrenal function (I'm guessing the years of malnutrition, etc burned out my adrenals) and am wondering if this is why the anxiety has not resolved. My tolerance for stress is still very low. There is depression in my father's family so maybe there are other factors working against me?

you mentioned adrenal fatigue- that usually goes hand in hand with thyroid issues- have you been tested???

because all tho my anxiety/depression/& neurological issues improved after going gluten free-> i still had quite a bit anxiety & fatigue & depression- now that i am diagnosed with Hashimoto's and on Synthroid & Cytomel- my Anxiety & Depression have improved SIGNIFICANTLY. i actually experience an OPTIMISIM everyday that i dont remember feeling in years!!! not even when i was on Antidepressants.

i suspect i have Adrenal Fatigue as well... and have just started taking some Rhodiola. it's all about balancing our body- which sometimes takes more than removing gluten..

for many Gluten Intolerants- a Deficiency in B12 causes all the anxiety- that was my first suspicion- but my numbers were pretty great- so that was frustrating not finding that answer right away. my sister in law had a B12 deficiency- and she ended up in the ER with panic attacks & peripheal neuropathy.. the only help the doctors were offering her were Xanax & Antidepressants <_< she started getting shots & normalized.

at the time i was getting my thyroid test- my PCP wanted to put me on Antidepressants- <_<

good luck!

precious831 Contributor
precious831
Posted

I was gluten-free/DF for a year and also was not improving much so after a lot of talk with the GI and my own personal research, I decided to avoid all grains all together. The difference was like night and day for me. Plus I'm no longer suffering from high blood pressure, not borderline diabetic anymore as well. I know this is drastic but if all else fails(I was very desperate) then you could try going grain-free. I also avoid soy, I'm intolerant to it. Also my 3 yr old is also grain-free. We live on a paleolithic diet pretty much.

I hope this helps, again I'm not saying this is the answer but it might be worth a shot. Good luck. There's quite a few of us here(not a whole lot) who are grain-free celiacs.

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LivesIntheSun Apprentice
LivesIntheSun
Posted

All of this sounds like great advice. From my own experience regarding anxiety, I would recommend working hard on your blood sugar levels, I guess the avoidance of grains which precious is doing would help a lot for this.

The reason is that if your blood sugar drops, then your adrenal glands are stimulated (which can cause anxiety attacks). So you need to avoid spiking your blood sugar in the firstplace, hence avoidance of sugar, refined carbohydrates, for some people all grains. Also stimulants such as alcohol, coffee and cigarettes... Regular small meals and snacks which include some protein and some fat. A little something before bed, and always always breakfast with some protein.

cap6 Enthusiast
cap6
Posted

I am 60 & 10 months gluten-free and still having bad days, mainly a constant battle with C. I too thought that I would be "well" by now but guess after so many years it is going to take longer. I have read that the older you are when diagnosed the longer it can take to heal which makes sense.

Cinnamongirl Rookie
Cinnamongirl
Posted
  • Author

It took me a LOT of supplements until my mind cleared up and as you can tell by the timeline in my signature, it took a while. I was on the supplements for months until I got my psych issues to resolve, and that was after a full year gluten-free. I'd recommend you go onto a high-potency multivitamin, mineral, and trace element supplement along with some fish oil. It is particularly important to supplement B-complex and vitamin D but I take a lot more than that. I take a particular supplement that was recommended to me by a functional medicine Dr. called Open Original Shared Link but most people flinch at the price. I figured getting my mind back to normal was worth just about anything. My understanding is that Metagenics and Solgar also make good supplements but I haven't looked into their prices.

Thanks to each of you for all the advice. I have done adrenal testing through ZRT labs (4 saliva samples throughout the day for cortisol, DHEA and other hormones). My morning cortisol is depressed which may explain why mornings are hard (cortisol levels are low normal the rest of the day). My DHEA also came in very low which is also an adrenal issue.

I have tried sublingual B-12 and initially it had a strong calming response, but the response is less pronounced now. I also have been using brown rice protein powder and can feel some effect mentally from the amino acids. I have not taken a multivitamin in some time so I'm going to do and then try some supplements that have been suggested.

If I try going grain free, how long would it take to see a result? I would be willing to try it for a few weeks if that was long enough to tell. Grain free sounds pretty difficult - I'm just finally getting the hang of cooking with gluten free flours!

precious831 Contributor
precious831
Posted

If I try going grain free, how long would it take to see a result? I would be willing to try it for a few weeks if that was long enough to tell. Grain free sounds pretty difficult - I'm just finally getting the hang of cooking with gluten free flours!

Luddie Newbie
Luddie
Posted

I've been diagnosed with celiac disease for two years and was doing well. Then something happened...not sure what but antibodies went up and arthritis set in. Can't find the gluten and now have to figure out what else is going on. I'm also an "older" newbie (over 70).

I have quit grains for the time being (past 2 weeks) and my doc suggests at least two more weeks. Also stopped nuts, chips, dairy, alcohol, legumes, beans, nightshade vegetables...and I forget what else! Oh yes, Chocolate :angry: but tonight I tried a piece. We'll see.

Yes, it's really challenging to keep trying, but I know one day all the puzzle pieces will fall into place for me. I guess I'm fortunate that I don't get depressed about it (too often) just sort of ticked off that I have to worry about what I eat when I thought I had a really good diet! Going out is certainly hard at this point, but I've been very lucky that two out of the last three waiters were knowledgeable and kind and helpful. Asking for a salad with olive oil and lemon wedges gets around the vinegar issue. Asking whether or not they "slide" their grilled steaks with oil to make them look really tasty is another thing to remember (tell them not to). I'm hopeful I'll be able to add in some dairy and some sort of thickening agent soon as I, too, love to cook. It's hard to be creative without that option.

Good luck!

GFinDC Veteran
GFinDC
Posted

It's not unusual for celiacs on this board ot have additional food intolerances beyond gluten. So that is something to consider as a possible cause of your ongoing symptoms. Soy, eggs, dairy, fish, corn, nightshades etc can all cause symptoms. Vitamins are great but if you are reacting to another food you won't feel right until you get it out of your diet.

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