Should Mental Recovery Take This Long?

[bbdailey]

Ive been gluten free for 8 months now and Dairy/Soy free for about 6 months. Cutting out gluten definately helped with a lot of my physical symptoms and also eliminated the harsh mental symptoms(Panic attacks, deep depression) but it seems like I havent really been improving past that. I still have brain fog/slight depression/fatigue and am starting to wonder if this is the answer. I wonder because I diagnosed myself. Like I said being off gluten has definately been benificial but I still feel mentally disabled(not working/want to move out on my own but afraid to).

So my question is this: I know recovery can take a long time but has anyone experienced this? Has anyone experienced slow to nonexistant improvements with their mental state through recovery? I feel as if I hit a plataeu about 2 months in and havent mentally progressed from there. Im starting to wonder if there is something else causing this mental state and its getting so frustrating!!

[ravenwoodglass]

We can have other issues independant of the celiac. It sounds like the diet has helped you a great deal but you may need some additional help. Have you talked to a counselor or your doctor about this?

[Skylark]

My mental status didn't recover until I went on a multivitamin/mineral/trace element supplement and lots of fish oil. I had been gluten-free for a year and was still bipolar. I also took probiotics for about six months to be sure I was absorbing the supplement. It took about four months for me to come out of the fog, and I felt a lot worse before I felt better. The burst of nutrition messed with my brain chemistry at first, and gave me candida problems on top of it. Once I adjusted, killed the yeast with Threelac and herbs, and went through the dieoff, my mental health completely turned around.

I think I was just too deficient to heal on my own from years and years of malabsorption. Unless you're eating carefully farmed organic food, you won't necessarily get what you need from food any more. Industrial agriculture has stripped much of the nutrition out of the soil. The supplement I use is called EMPowerPlus from Open Original Shared Link .

You should also probably talk to a doctor about vitamin D, B12, and thyroid testing.

[bbdailey]

Yes... I have been from doctor to doctor. I was diagnosed with hashimotos with positive APO antibodies but all of my thyroid levels are normal. I took thyroid meds in july/aug and started to feel better, then at the end of august things got very bad again so I stopped the medication. After a month of not getting too much better I decided to take the medication again. This time I took them longer and didn't feel any better..maybe a bit worse. So I stopped the medication again and decided it must have been the diet that was making me feel better the first time. So now it has been a month since stopping the medication and 4 months since feeling better and now I'm starting to wonder what to do:(

[Skylark]

You have to be on a constant dose of thyroid medicine, taken at the same time every day, for about three months to stabilize. Also, part of the reason you got put on thyroid is to suppress the amount of TPO enzyme your body makes, which lowers the inflammation and autoimmunity.

I'm not feeling right either, but I'm finding that GAPS diet is slowly working to improve how I feel. Paleo is also supposed to help with autoimmunity and the food lists are similar. I've also discovered that I'm dairy intolerant and I think nightshades may be causing me problems.

[saintmaybe]

I've been gluten free for five months, and I've been finding new improvements every day. The brain fog definitely has cleared up to the point where I can read a whole book or study again. My nails and hair are growing out strong and healthy and beautiful. I have red, curly hair! Who knew?! It's been unhealthy and scraggly brown my whole life, but my natural actual shade is chestnut red. So cool.

I've been finding for my mental best, I have to be very consistent at taking my vitamins, as well as Prozac, and topamax for anxiety. Going gluten free took my depression from a ten to a 3, and my anxiety from off the charts to a five, but being on medication takes me the rest of the way. There are a lot of people who'd tough it out medication free, but you k ow what? I've had my fill of that. I'm tired, and there's no shame in accepting help when it's on offer.

[Skylark]

Meds are lovely if you tolerate them and they help! There is nothing that works for me, which is what finally made me try other stuff.

[eatmeat4good]

I was severely debilitated by brain fog, depression and anxiety. I knew being gluten free was helping but it seemed awfully slow and I had recurrent anxiety. Traces of gluten bring back depression and anxiety so severely that I wondered if it could really be from gluten or if I was essentially losing my mind. You have to be extremely careful about cross contamination and traces of gluten. Do you live in house with gluten eaters? Do they ever use flour? Are you sure you are not getting traces of gluten?

Healing takes time but I think for those of us with brain reactions to gluten, or neurological symptoms, healing may take a bit longer. Above advice on vitamins is good. And to get your levels up also takes time. I'm one year gluten free and not really back to normal but waaay better than I was. Don't doubt yourself on the gluten. Stay off of it and get stricter. Then add the vitamins and fish oil and look for other food intolerances. I had several and still do. But when I get no gluten at all....I improve quite consistently. Hang in there...this is difficult. Ask your Dr. for medication if you feel you need it. I take Xanax for the extreme anxiety I get after I get glutened accidentally. It doesn't happen very often, but it is scary when it does.

[bbdailey]

Thanks for the responses! Before I went gluten free I was put on zoloft for a while and it didnt do anything for me. I know that there are a lot of different medications and I just used one but deep down I just feel that it is something else. I have never had depression or anxiety before until the last few years when the symptoms started to show up.

Eatmeat4good: I do live in a gluten house and they do use flour. I try my best to stay away when they are cooking. We also share pots and pans but I use tin foil to bake things and make sure items are completely cleaned before using them. Its weird because my "glutened" symptoms seem to be bloating and gas but I can never seem to pinpoint things. I have been wondering lately if my symptoms are taking days to show up because nothing ever matches up. I felt like I was possibly getting a bit better a couple weeks ago(very slightly better) but the last week I have felt very lousy. I never have those "good" days its kind of just bad and more bad.(That being said it is nowhere as bad as it was before but I just feel like Im existing rather than living life)

I am so confused what to do because I did start to feel better 3-4 weeks after starting on levothyroxine. This was 2 months into the gluten free diet and I also cut out dairy/soy at the same time I started the medication. Right when I thought everything was figured out I became VERY depressed again so I stopped taking the medication.(Sry I know i went over this in earlier post) After a month off the medication and not feeling well I went back on the medication. After 9 weeks on the medication I felt a bit worse.(felt better after 3-4 weeks the first time) So I decided it must have been the diet that made me feel well after all. Now everyday that goes by I am trying to figure out what to do and if I am going down the right path.

Am I crazy for thinking that the diet made me feel well? If so why dont I feel well now(5 months later/ Did the thyroid medication mess me up that bad?) Or does it sound like I need the thyroid medication? If so why didnt the thyroid medication work the second time?

Sorry for all the rambling and questions! I just feel like this is the only place that I can talk about this...most everybody else is tired of the situation(As am I!!!) and thinks I need to be on an anti-depressant. If I do that is fine but I want to cross out other options first as the AD didnt seem to work for me the first time around.

[Skylark]

An endocrinologist needs to determine whether you need thyroid medication. We cannot do that on a message board. If you need it, you have to take it come hell or high water. You can't skip doses, or play with it. Your body isn't designed to work that way and you can make yourself ill. You have to work with your doctor to find the proper dose of thyroid. Out of curiosity, did you get Synthroid or Levoxyl or were you taking a generic? The dosage can shift from one time you fill the bottle to the next on generics. You may also be a person who needs natural thyroid and can't handle T4-only.

Hashimoto's is progressive, so your thyroid could be getting worse. It sounds like you haven't been back to your doctor for followup thyroid testing. It can also cause periods where you thyroid puts out either more or less hormone, and make you feel generally ill because of the auto-inflammation. Gluten-free/casein-free tends to help with inflammation, which is why you may have some relief.

I would strongly suggest you get to an endocrinologist and see if they can't get you doing a little better with the Hashi's.

[eatmeat4good]

I think you are constantly getting glutened and you don't really know yet how it feels to not be glutened. Flour is easily airborne and can hang in the air...some say for hours...some say for 2 days. If you walk into the kitchen and breathe...you can get sick from the wheat being inhaled hitting the nasal passages and ultimately making its way to your stomach. It only takes molecules to make a Celiac sick.

Keep considering the thyroid issue as I cannot speak to that. But you really need to think about all the places gluten can be in your environment. That can be really hard to do when you don't feel well. I remember that very well. I used to think the thing about flour hanging in the air was a little paranoid. Then I went to my sister's house to visit after she had baked cookies. Ugh, migraine, nausea, brain fog, depression, anxiety....and I didn't eat any cookies....I just looked at them. So how in the heck did I get glutened? Well, the flour thing made sense and I'd read about it here. Either that or flour particles landing on glasses you drink from. Basically I won't eat anything from a kitchen where flour has been used and I know it. That includes restaurants, other people's houses, and it also includes drinking from glasses in these places too. I cannot imagine living in a home where flour is used for cooking. I know some people share kitchens with gluten eaters but I know for sure I would be sick as a dog. I hope I don't sound harsh, I just want you to get well. I get severe depression and anxiety if I get glutened. It seems too severe to be related to gluten even. But it is directly related. And it only takes traces. You may need medication, I'm not saying you don't. But I think you are getting glutened in your home..and unless you can find a way not to breathe while you live there....well um...no that won't work will it? Maybe you can ask them to not use flour? I hold my breath when I walk by the bakery section of a store. It sounds paranoid but it isn't when you know it only takes molecules to make us sick and flour is easily suspended in the air. Remember the "poofs" if you have ever poured flour from one container to another...yeah...radioactive cloud of kryptonite I say. It will render you useless for days. OK rant over. Sorry.

[red island]

I agree with eatmeat4good. My brain fog, anxiety and wild mood swings never went away til I totally replaced all my kitchen stuff that wasnt glass or stainless steel. Also, 2 out of the 3 times that I knew how I'd been glutened were from eating or drinking at someone else's home. My symptoms are pretty consistent in that they show up 4 hours later. I thought for the first 3 months of going gluten free that I was doing a really good job but all these vague neuro symptoms would happen. It wasn't til I really cleaned up my kitchen that they finally went away. If I had to share a kitchen with others who were eating gluten I think I would consider getting separate plates, utensils and a few pots of my own and keeping them in some type of rubbermaid container or separate cupboard to start with and see how things go from there.

[bbdailey]

Thanks again for the responses!

Skylark: I was prescribed 50mcg of levothyroxine which is a generic I believe. I was prescribed by my endo who said "I doubt this will help your symptoms". All my thyroid tests are in the normal ranges other than having positive APO antibodies. With all the tests being in range it leads me to believe that the thyroid couldnt be causing such severe symptoms? Also I am a younger male/my thyroid isnt swollen or uncomfortable/and I have no goitors or nodules so this is another reason that I believe that my thyroid wouldnt/shouldnt be causing all this trouble. I am hoping to set up an appointment in the future with a team of doctors to help me figure this out because ive had what seems like every test known to man and my doctors right now seem to be stumped.

Eatmeat4good: Your right it could be CC issues. Its tough because I want to move out and have my own place with my own cooking supplies so I can avoid all traces of gluten but I feel stuck with this mental state I am in. I need to talk to them about cooking with flour and getting my own cooking supplies. That being said I feel like I am not super sensitive because when I was feeling a bit better I was doing everything the same...cooking with shared pots and pans,etc...if anything I am more vigilant now about CC issues. These are some of the reasons that I keep bouncing around about other possible problems:P

[eatmeat4good]

Ok, your reactions can vary and it can go like this. Your body is relieved that the huge gluten load is gone when you go gluten free and stop ingesting large amounts of wheat. So it stops reacting and you start feeling well. Then your body starts reacting to smaller and smaller amounts of gluten because it doesn't ever want to have to deal with gluten again. If you are Celiac then antibodies are involved and damage is done even by the cross contamination. In the beginning you were healing and feeling good because you eliminated gluten. Now your body is telling you to get rid of shared pots and trace gluten can make you severely ill even if you think it is other problems. I went round abouts with other food sensitivities too. I still mostly eat only meat and veggies. I think grains are very bad for me so I went Paleo and I feel better than ever. If you are unable to work and you are having neurological problems like depression and anxiety, you can suspect you are becoming increasingly sensitive to gluten. That can seriously stall your healing. You may not be super sensitive...but Celiac is Celiac. Molecules can make us sick if we are super sensitive or not and if we are self-diagnosed or not. I wish I could give you a room until you are healed.

[bbdailey]

Thats a great point eatmeat4good!

Couple of questions: If it is the CC does it make sense that Im not having "glutened" episodes, but rather just feeling lousy overall? Also I need to get new pots and pans but in the meantime is it safe to just bake everything with tin foil? Also do things like plates/bowls/silverware need to be replaced or just for the super sensitive?

[Skylark]

I'm wondering about thyroid because what you describe is dead-on what I've been experiencing since my TPO antibodies got high. (The antibody is TPO by the way, not APO. It stands for thyroid peroxidase.) It's hard to get the mental symptoms of Hashi's to go away. Like you, I feel somewhat disabled. It takes me hours to do work I could have done in minutes two years ago and my memory is shot.

On the other hand, sometimes apparently normal people do test positive for TPO antibodies. If there is a chance you're getting gluten that could do it. A gluten-free diet needs to be very strict. You just sound so hypothyroid... Are you often cold, gaining weight, tired, dry skin, dry hair, brittle nails, wounds tending to heal slowly, getting sick a lot, recovering poorly from exercise, or any physical symptoms?

I would STRONGLY advise you supplement fish oil to a bare minimum of 1000mg EPA+DHA; my nutritionist friend recommends 2000mg. If you are deficient, sometimes fish oil alone will help mental illness. That will take a concentrated preparation or a couple spoonfuls a day. If you burp it, buy a flavored version or an enteric coated capsule. A lot of physical and mental illness in the US is omega-3 deficiency (and omega-6 excess from overconsumption of vegetable oils) and it's a myth that everyone gets what they need from vegetable sources.

Other things to look at are trying a metfolin supplement or using some 5-HTP.

[bbdailey]

I do seem to have many symptoms of hypothyroid but they could also just be from celiac as well. I am very tired, I have all the mental symptoms of brain fog/slight depression/poor memory, I usually seem to be cold(although it is winter so it could just be that). I am definately not overweight. I am 5'9 and was 150 before going gluten free and in the past month due to a very strict elimination diet I have fallen to 130 so I really need to gain some weight!

I could possibly be a BIT hypothyroid but even then would that cause all these symptoms? I feel like my levels would have to be way off to have symptoms like this so that is why I lean toward it been celiac.

[eatmeat4good]

Cook everything in tin foil. That is your best option for now. I got an electric skillet and cook everything in that. You can make rice in the microwave with a plastic container like those glad disposable containers. I know some people are worried about PCB's and plastic in the microwave...if you are one of those then use glass. Um...I don't worry about that but perhaps I should.

Ok now then, what do you mean by "glutened" symptoms? What are yours? Lousy overall is very nice summary of being constantly CC'd or trace glutened. I think your lousy feeling might be the CC issues but I don't know what you feel normally when you are glutened. There are over 300 symptoms of Celiac and Peter Greene the author of Celiac A Hidden Epidemic writes about how this is why it is so hard to diagnose. Many people describe it as a feeling of constantly having the flu....that would fit with your description of "feeling lousy". So yes, it could be gluten.

Plates, bowls and silverware.- Most of what I have read here says these things should be fine if they are washed well. However, I would encourage you to look at the surface between the tines of forks and often there is food in them. Gluten is a very sticky molecule. A dishwasher can get them clean, but if other's are handwashing be very careful. Soap and water remove gluten, but lousy dishwashers can leave a lot of gluten on the bowls plates and silverware. I would not trust it unless dishwasher washed. Also, counters- put paper towel down whenever you make something. Then you don't have to scrub the counter all the time. Do not share condiments like butter, jelly, peanut butter. That is a big way of getting CC. If a knife goes on bread and back to the jar...there is gluten there and it can make you sick.

The sponge- don't use the gluten sponge or dishrag to clean your stuff. Personally I would get a few things and keep them in a plastic box with a lid. You want it to be inconvenient for others to grab and use so they don't cook gluten in your stuff.

I eat right out of the plastic glad containers with my own fork. But you will find out if this is an issue for you. You just never know if people had gluten on their hands when they put dishes away so you have to wash the plate before you use it if you really wanna be sure.

towels- people wipe their hands on kitchen towels. Gluteny hands too. You want your own towel. Just wash one and keep it for yourself.

Feel free to ask away. You are doing great.

[eatmeat4good]

Skylark makes good points yes, do be sure you are taking vitamins too. And that they are gluten free. I have Hashimoto's too, but my levels always test normal for now. I'm not on medication at this point. Probably will be someday.

[Skylark]

I do seem to have many symptoms of hypothyroid but they could also just be from celiac as well. I am very tired, I have all the mental symptoms of brain fog/slight depression/poor memory, I usually seem to be cold(although it is winter so it could just be that). I am definately not overweight. I am 5'9 and was 150 before going gluten free and in the past month due to a very strict elimination diet I have fallen to 130 so I really need to gain some weight!

I could possibly be a BIT hypothyroid but even then would that cause all these symptoms? I feel like my levels would have to be way off to have symptoms like this so that is why I lean toward it been celiac.

Celiac can be the underlying cause of thyroid trouble. For me, my brain recovers last from thyroid problems. I can be only mildly hypo and very depressed.

[bumblebee-carnival]

Have you tried desiccated thyroid medication instead of synthetic? Something like Armour or Westhroid has both T3 and T4. For whatever reason doctors favor synthetic thyroid replacement, but a lot of people find relief that they weren't getting from synthetics on desiccated thyroid meds.

[bbdailey]

Your hashimotos sounds similar to mine eatmeat4good. I will more than likely have to take thyroid medication sooner or later but at the moment my ranges are normal.

Skylark: When you say you get symptoms being a little hypo do you mean youre levels are out of range...or just low in there range?(ex. TSH at 3 rather than 1)

Bumblebee: I havent tryed the dessicated thyroid medication...I have only had levothyroxine(50mcg). I ended up stopping because I felt like my body didnt need it. It made me feel a bit anxious(not just at the beginning but basically the whole time)and also very tired as well? It also gave me bad acne on my back along with a few other symptoms that seemed to indicate that it was too much.

[Skylark]

Skylark: When you say you get symptoms being a little hypo do you mean youre levels are out of range...or just low in there range?(ex. TSH at 3 rather than 1)

I do not feel well with TSH over 2.0 or free T4 in the low part of the reference range. My mental symptoms kick in first and resolve last.

[eatmeat4good]

Your hashimotos sounds similar to mine eatmeat4good. I will more than likely have to take thyroid medication sooner or later but at the moment my ranges are normal.

Skylark: When you say you get symptoms being a little hypo do you mean youre levels are out of range...or just low in there range?(ex. TSH at 3 rather than 1)

Bumblebee: I havent tryed the dessicated thyroid medication...I have only had levothyroxine(50mcg). I ended up stopping because I felt like my body didnt need it. It made me feel a bit anxious(not just at the beginning but basically the whole time)and also very tired as well? It also gave me bad acne on my back along with a few other symptoms that seemed to indicate that it was too much.

I saw an endocrinologist for the Hashimoto's. He said he didn't want to medicate for that very reason, anxiety would be the result if one didn't really need the Levothyroxine. He didn't want me to feel worse. I wanted to take a thyroid med because I had more depression than anxiety but they wouldn't let me. I guess we wait until the thyroid burns itself out and then we take the meds. If you can check the thyroid level regularly that is the only way to know if you need it or not. I guess I'm glad I don't need it yet as I wouldn't want the anxiety side effect. The anxiety from trace gluten is bad enough...I wouldn't wanna live that way every day. So watch your gluten contamination and monitor the thyroid. I hope you feel better soon.

[bbdailey]

That sounds close to my numbers skylark. My TSH was 2.2 and my free T4 was in the lower range I believe. When u say you don't feel well what do you mean. Are you still able to do things and enjoy life?