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So Confused...need Help

bbdailey

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bbdailey Explorer
bbdailey
Posted

Hey everyone sorry in advance since this will be long. I have been gluten free for 6 months now and still not feeling great and I dont know what else could be causing all these symptoms. So heres my story from the beginning.

Im 23 and male. I started noticing little things my junior/senior year of college that i looked past such as: fatigue, irritability, constipation, lower sex drive. I never really thought anything of them until after things got really bad. Anyways the summer after I graduated(2010) I wasnt really doing anything.(Didnt want to go out but I thought everthing was normal. Fast Foward to October: I knew that I wasnt feeling great but I never thought I ccould have something wrong with me so I just chalked it up to a crummy job and living at home with few friends around. Then one night I was feeling really crappy and tried to go to sleep and had a "panic attack". After that things just got worse with a few more "Panic Attacks" and deep depression. All the doctors said that it was in my head. Ive always thought Ive been very tough mentally so I tried to suck it up and get it out of my head...but this was not in my head.

I ended up having to leave my job I was in such bad shape. The months following I sat at home with so many symptoms that included: Depression, anxiety, major brain fog, fatigue, extreme constipation, heart palpitations, muscle spasms, extreme cold, hands and feet fell asleep all the time, irritablity, very moody, and many more. Nothing was changing and I was going to the doctors what seemed like every week to figure it out. The doctors kept pushing anti-depressants. I did not want to go on anti-depressents but after nothing was changing for months I gave in and started zoloft in Feburary. I took it until May with nothing getting any better.

Fast Foward to May(2011): I had just been diagnosed with Hashimotos Disease and thought that was the answer to my troubles yet my thyroid function was still fine? So I did a lot of research and decided to cut out gluten. I was tested for celiac disease through bloodwork and biopsy but both were negative. I was 2 weeks gluten free when I took the blood test and 3 months gluten-free when I had the biopsy so I figured they would be negative anyways. Through the first couple months of being gluten-free I started to be able to use the bathroom for the first time in a LONG time and all of the symptoms seem to simmer down. That being said I still felt far from normal with brain fog and fatigue and generally still felt unwell.

In July I was still feeling not great but much better than before going gluten-free. This is when my girlfriend broke up with me. I desperatly wanted to be normal again so I began take thyroid replacement and cut out soy and dairy. In about a month I actually started to get a glimpse of normality again but then I had a colonoscopy in late august and shortly after that I became very depressed/anxious and very scared so I stopped taking the Thyroid medication. About a month later I wasnt extremely depressed anymore but didnt feel well like i had before the colonoscopy so I decided to try the thyroid medication again. 5 weeks later I had been feeling very anxious and the doctor said I probably dont need the medication and it was possibly the diet that made me feel better. He said that if im not feeling better in the next couple of weeks then it is probably in my head and I should start another anti depressant. I really dont want to go on anti-depressant because I REALLY dont think that is the problem.

Anyways Im sorry for the long post but I am very confused and frustrated with so many questions. Did I mess up my recovery with this thyroid replacement? I have been gluten-free for 6 months and still not normal...Can it take this long or longer? I still have brain fog and slight depression/anxiety...Like I said I definatly can tell a difference off of gluten. Not only have the symptoms gotten better I noticed that after stopping gluten I wasnt getting EXTREMELY bloated and SUPER gasy. I also noticed that the "panic attacks" came after eating dinner with lots of bread and gluten. Im just confused since I wasnt actually diagnosed with celiac. If anybody has storys of recovery that took a very long time(not only the physical symptoms but the mental to) that would be appreciated! Anyways sorry its so long and thanks if you took the time to read my story!

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Marilyn R Community Regular
Marilyn R
Posted

Dear bbdailey,

Healing takes awhile, and there are other food intolerances that might crop up that prolongs your healing. I'm approaching two years gluten-free in a few months, but had problems with soy, dairy, corn and legumes in the meantime. I'm quite a bit older than you, so maybe you'll heal quicker without additional food issues.

gfcolorado Newbie
gfcolorado
Posted

It sounds like so many doctors tell patients it's in their head. First of all, you might want to contact support groups and think about find another doctor/s. Or, ask people here.

I was diagnosed with Hashimoto's and Celiac at the same time (3 years ago). Before being diagnosed, For the first time in my life, I was starting to feel really down and getting out of bed in the morning was tough. But I had young kids so I had to and I continued to exercise but I was always really tired. I thought it was because I was getting older. I also found out my vitamin D was really low. So I started synthroid, a gluten free diet and vitamin d supplements and my energy quickly came back. And my moods were back to normal, too.

I now have a great endroconolgist, GI and internal medicine doctor. At my exams, they usually ask about my moods. I think it's because they all understand the connection between hashimoto's, celiac and moods.

Here are a few things to think about:

How often are you getting your thyroid checked? What is your TSH? For the first few years, I got mine checked every 3-4 months until it was stable. With Hashimoto's, you can have spikes which can make you feel bad. Mine has been below 1 since the first 6 months on synthroid but once it spiked to 60. Many people with Hashimoto's feel best around 1 so it's possible your tsh is testing "normal" but that you should be lower.

Have you had your vitamin d tested? This could also be causing you to feel tired if it's low.

You may not have Celiac Disease (yet) but gluten sensitivity. The symptoms are very similar to Celiac although you don't have the intestinal damage. Because you have Hashimoto's and they are closely linked, you may just be in the early stages of Celiac so that's why you are testing normal.

You might want to post your Celiac test results. Did you have the DGP IGA and DGP IGG tests? These are newer tests and seem to be more sensitive.

I would really ask around and find a good doctor who is knowledgeable about Celiac and gluten sensitivity.

I hope this helped. Hang in there. I think you will get some great answers from this forum.

bbdailey Explorer
bbdailey
Posted
  • Author

It sounds like so many doctors tell patients it's in their head. First of all, you might want to contact support groups and think about find another doctor/s. Or, ask people here.

I was diagnosed with Hashimoto's and Celiac at the same time (3 years ago). Before being diagnosed, For the first time in my life, I was starting to feel really down and getting out of bed in the morning was tough. But I had young kids so I had to and I continued to exercise but I was always really tired. I thought it was because I was getting older. I also found out my vitamin D was really low. So I started synthroid, a gluten free diet and vitamin d supplements and my energy quickly came back. And my moods were back to normal, too.

I now have a great endroconolgist, GI and internal medicine doctor. At my exams, they usually ask about my moods. I think it's because they all understand the connection between hashimoto's, celiac and moods.

Here are a few things to think about:

How often are you getting your thyroid checked? What is your TSH? For the first few years, I got mine checked every 3-4 months until it was stable. With Hashimoto's, you can have spikes which can make you feel bad. Mine has been below 1 since the first 6 months on synthroid but once it spiked to 60. Many people with Hashimoto's feel best around 1 so it's possible your tsh is testing "normal" but that you should be lower.

Have you had your vitamin d tested? This could also be causing you to feel tired if it's low.

You may not have Celiac Disease (yet) but gluten sensitivity. The symptoms are very similar to Celiac although you don't have the intestinal damage. Because you have Hashimoto's and they are closely linked, you may just be in the early stages of Celiac so that's why you are testing normal.

You might want to post your Celiac test results. Did you have the DGP IGA and DGP IGG tests? These are newer tests and seem to be more sensitive.

I would really ask around and find a good doctor who is knowledgeable about Celiac and gluten sensitivity.

I hope this helped. Hang in there. I think you will get some great answers from this forum.

Thanks gfcolorado!

I have had my vit d checked. It was 30 the first time then I started taking vitamin D and last time it was 50 i think. Ive had my TSH tested many times and it was at 2.2 in september. I was just on the levothyroxine 50mcg for 5 weeks but was feeling very anxious and uncomfortable so the doctor advvised me to stop. This was the 2nd time trying the medication and the first time on it I actually felt somewhat well but I had also cut out dairy and soy at the same time. I stopped the first time because I became very depressed for no reason a couple of days after my colonoscopy. My FT4 was .97 and FT3 was 3.1 if that means nething to you. Im hoping that it just takes time being gluten free because I just stopped the thyroid medication and if thats really the answer i dont know when I will get a chance to go on it again because everybody seems to think the next step is antidepressants.

mushroom Proficient
mushroom
Posted

You could try taking 25 mcg of levothyroxine, which is what I do (actuallly 50 every other day) and see if that keeps you in balance. Thyroid is a hard thing to get the dose right with. T4 is converted to T3 by the body and, as I recall (somone correct me if I'm wrong here) they should be roughly in balance, so the 50 might be too much for you. Just a thought.

But yes, recovery does take a while, especially for the brain fog to clear, and you have to be patient and sometimes explore the side roads to find out how to keep your body in good health. If you just stop taking something suddenly, your body often doesn't like it because it hasn't had time to adjust. Some meds you need to ween yourself off, like the antidepressants; try taking the thyroid every other day or every third day and see if that helps. Be aware of what you are eating and what your symtoms are to see if any other foods are bothering you. And try to be patient. :)

frieze Community Regular
frieze
Posted

check your thyroid med, make sure it is guten free. Check for B12 def., or just take it orally on an empty stomache, methylcobalamin preferred.

ravenwoodglass Mentor
ravenwoodglass
Posted

check your thyroid med, make sure it is guten free. Check for B12 def., or just take it orally on an empty stomache, methylcobalamin preferred.

Do try the B12 but take the sublingual tabs that dissolve under the tongue as those will be able to enter your system bypassing your damaged intestines.

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Reba32 Rookie
Reba32
Posted

I'd second the suggestion to try a different dose of the thyroid replacement meds. A lower dose may be what you need. A high dose can kick your thyroid into hyperdrive, and this will cause panic like feelings and anxiety. It may take a while to find the correct dosage for you, but keep at it. And your doctor should have thought of this first off, rather than suggest you stop taking the meds altogether. If you can, find a new endo!

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