Normal To Feel Great 1St Week, And Up And Down After?

[Beary133]

I'm new to the site, and decided to join since so many others seem to have gone through what I'm going through; however, I couldn't find a post just like mine so I wanted to start one myself.

Just to give some background, I have Graves' disease (autoimmune disease affecting the thyroid). Been diagnosed with thyroid issues since January. My doctor wanted to kill off my thyroid, and I refused to do that permanent solution. A friend told me that she, too, had Graves' and she went gluten-free after someone told her that her symptoms mimicked Celiac disease, and since her thyroid levels have completely normalized.

After reviewing the symptoms, a lot are the same for Graves and Celiac, so, without going to a doctor first to check for Celiac, I began a gluten free diet because I was desperate to feel better.

Before going gluten-free, my symptoms were - I was tired all the time, had 3pm crashes where I was exhausted and needed coffee or an energy drink to make it through the day, just felt "sick" all the time, started having social anxiety issues (completely uncharacteristic of me), random bouts of eczema, horrible PMS and periods, EXTREMELY irritable, constant headache every day, and random other symptoms. I never really had stomach issues though.

The 1st week gluten free, I had so much energy, my mood improved, and I felt great. It was like a miracle. I am now on week 3, and, beginning with week 2, I haven't felt "great" anymore. My stomach is a complete wreck, no consistency in hardness of stools or timing, and will decide I need to go at any given moment. My mood has been very up and down. I call them bad "thyroid" days, because I have blamed my behavior on my thyroid for 7 months.

So what I am wondering - did anyone else have issues with up and down days? I feel like I'm back at square one, and being gluten free is hard. I assume that because I felt good week 1, that I do have gluten issues, but why do I feel awful again. It's just frustrating. Should I try supplements? Any help, advice, suggestions, anything is welcomed. Thanks in advance

[notme]

i don't have thyroid issues (although it is so common, i am almost expecting it) but you are probably going through gluten withdrawal.  now that gluten is out of your system, your body is re-adjusting.  i went through it - feels sort of like the flu - i had to rest and i drank alot of water.  it took a couple of weeks to feel better again, but every day was a little better.  

 

your symptoms sound so much like mine were - the social anxiety issues blew my mind - like you said, totally uncharacteristic of me, too!  i had soooo many symptoms clear up - some i didn't even know i had or were related to prolonged adverse gluten reaction.  

 

also, you may find that, now that gluten is out of your system, you could have secondary sensitivities to other things.  i don't do well with soy <and it mimics my gluten reaction, just doesn't last as long)  but some people have trouble with corn, dairy, eggs, etc.  you might want to keep a food journal to pin down what your body is reacting to.

 

or, are you eating anything different or new that could be cross-contaminating you.  lots of people new to the diet think 'no problem, i can eat out here or there because the menu says gluten-free'  and that is not always so.  you can still eat out, you just have to be careful (and the people serving/cooking need to know not to let your food come in contact with, say, croutons, bread, flour, etc...  ) that you can trust other people to keep your food 'safe'  

 

welcome to the board and good luck!!  

 

that's my 2 cents, lolz, what say ye, thyroiders?  

[dani nero]

Before jumping to any conclusions and assuming that you might be having any other problems, let me point out that if you indeed have a problem with gluten, then it's not uncommon at all to start feeling poorly after the first week. It's probably just gluten withdrawal. Read this post https://www.celiac.com/forums/topic/91878-newbie-info-101/

It's an intro post for celiacs, but the information in it is useful for any person who intends to go on a gluten-free diet. 

 

Since you're not diagnosed, you might want to consider taking the blood test or resuming your normal diet before the withdrawal symptoms develop any further. If the withdrawal period passes and you start feeling better again, it will be a real tough experience if you decide to go to a doctor, because most of the tests they will want to perform won't work if you're already gluten free. It'll all come back negative, so they'll ask you to go back to eating gluten, and you'll go through worse symptoms since you've already cleansed your body, and you'll have to go through withdrawal all over. So decide now if you'll want to be officially diagnosed or not.

[cyclinglady]

I have Hashimoto's Thyroiditis.  For 15 years I was hypo and was easily treated with Armour Thyroid.  But, last year, I went from being hypo to hyper.  I had swings going back and forth.  It was awful.  I believe that the end of perimenopause may have triggered the swings as well as developing celiac disease but that's just a guess.  My hyper symptoms were extreme anxiety (not characteristic for me as my family considers me to be a "rock").  I first noticed issues with my right eye during hyper times and muscle weakness (not feeling strong and not good for a runner/cyclist).  Then too, I had developed a second anemia (iron deficiency) that really dropped my hemoglobin levels.  But I digress.....

 

My mother started with Grave's Disease (started during perimenopause too).  Now she's hypo.  So, it does swing back and forth.  My cousin also has Graves too  and my brother -- Hashi's.

 

Are you taking any meds to stop the hyper stage?  You might want to consider this if you feel that your eyes are being affected (bulging eyes, etc.)  My mom did not take any meds during her Grave's period, and ended up with permanent eye damage and was forced to retire.  She's has double vision at a certain level (e.g. she sees two speedometers on her car's dashboard).  She was problems reading and must close one eye.  She got special glasses, but they drive her nuts.   So, be careful.  She did get tested this month for Celiac but her blood tests were negative.

 

I do have to say that finding out that I have celiac disease has improved my thyroid and anemia.  I'm better able to absorb my thyroid hormone, vitamins and minerals.  I definitely see an improvement and I've only been gluten-free for three months.  Took six weeks or so to finally notice a difference though.  So, give the gluten-free diet time.

 

My husband's been gluten-free for 12 years.  No formal testing.  He just knows that he doesn't feel well on gluten and his symptoms completely went away.  So, it's easy for him to not cheat and he won't do a gluten challenge. 

 

I hope this helps you.  There are several experts on Thyroid Disease on this forum.  I'm sure they can provide you with more details.

[Beary133]

My friend was never tested, and, since I found everything out through her, I didnt think it was pertinent to get tested. I've been reading gluten-free books and about Celiac disease. Not to sound completely ignorant, but why is it necessary to get tested? I don't see what difference it makes since everywhere I have read says that if you notice a change going gluten-free, you have a gluten sensitivity, in the least. So again, it's my ignorance to the fact, but I don't see how it will make a difference or what it will change so that's why I didn't bother getting tested. If it's something that could make a difference, perhaps I'll consider it, but I'm a poor college student and doctor bills pile up quickly.

I suspected that it may be withdrawals after reading other posts. I also think that a trail mix from Walmart may have traces of gluten in it because my stomach seems to churn every time I eat it, so I'm going to throw it away so I won't be tempted.

[cyclinglady]

Before jumping to any conclusions and assuming that you might be having any other problems, let me point out that if you indeed have a problem with gluten, then it's not uncommon at all to start feeling poorly after the first week. It's probably just gluten withdrawal. Read this post https://www.celiac.com/forums/topic/91878-newbie-info-101/

It's an intro post for celiacs, but the information in it is useful for any person who intends to go on a gluten-free diet. 

 

Since you're not diagnosed, you might want to consider taking the blood test or resuming your normal diet before the withdrawal symptoms develop any further. If the withdrawal period passes and you start feeling better again, it will be a real tough experience if you decide to go to a doctor, because most of the tests they will want to perform won't work if you're already gluten free. It'll all come back negative, so they'll ask you to go back to eating gluten, and you'll go through worse symptoms since you've already cleansed your body, and you'll have to go through withdrawal all over. So decide now if you'll want to be officially diagnosed or not.

I second this!   Ask your doctor about a Celiac Blood Test panel.   So far, I'm the only official person diagnosed with celiac disease who has autoimmune thyroiditis in my family.  My mom tested negative (Graves) and my brother (Hashi's) is scheduled to be tested in August.  Finally, you can develop food allergies/intolerances at any time.

[Beary133]

I should add I'm 25. I was on Methimazole, had an allergic reaction and was put on PTU. My doctor lost her credibility with me when she did not give me correct instructions for dosage. I was taking less than half of what I was supposed to take; however, my levels were almost normal on this dosage. I'm almost grateful as I would have gone hypo had I been taking the higher dosage.

I do not have the eye condition. I forget exactly, but that is a certain type of Graves (I believe, been so long since I did my research on it), and I did not test positive for that.

After I felt better eating gluten-free, I sent my brother the list of symptoms for Celiac disease. He said he may get tested for it if the neurologist cannot find anything. He has weird symptoms, and unexplained migraines that doctors/ENT cannot figure out. Perhaps if he tests positive, that will be evidence enough for me and I can save some money on doc bills lol. But again, if someone could explain why it is necessary to get tested, I would appreciate it. I had the mindset that I would try gluten-free for 6 months, and get my bloodwork redone to see how my thyroid is doing and take it from there.

[1desperateladysaved]

Why people get tested:

 

1,  To reduce the possibility that they will change their mind in the future about being on a gluten diet.

2.  To help gain cooperation from others around them with their diet or other accommodations.  Schools, for example need to make sure students remain on the diet in school.  Some need a confirmed diagnosis.

3.  For a firm conclusion that celiac disease is their problem or if they should look for something else..

4.  To help gage what sorts of treatment are needed.

5.  To find out what nutrients may be in short supply.

6.  Find food allergies or intolerances.

7.  To find what, if any, further problems the celiac has caused.

8.  One may want to be the first in the family, to help others in the family see it.

 

The final test is trying the diet and it is the ultimate test.  You may have good reactions or bad.  When I first went gluten free I had 4 blissful days before withdrawal symptoms hit.  Then I had many hard days full of fatigue, fogginess, and sadness.  I did have times when I swung from hopeless to giddy. You are not on square one when You are low.  At least I wasn't.  I finally emerged from foggy dizziness in the end, and enjoyed a clear mind and some energy.  I hope you will be feeling that way soon.

 

D 

[dani nero]

I'm not saying that you HAVE to get diagnosed, but that you should think about it and consider it NOW before you go gluten free. Because if you find out later that you should have gotten a diagnosis for any reason, things will be a lot tougher.

 

It's your life and it's up to you how you live it, and that is the same thing the doctors will tell you as well. They will tell you that it's your decision. I'm just saying that you should do some serious consideration, because going on a gluten free diet and detoxing now, then changing your mind later will be very hard on you. 

[Beary133]

I plan to stay gluten-free for life for my health since I have the known thyroid issues, I just didn't know if it was absolutely necessary to get tested. Thank you for the breakdown, and clarifying that for me! I read somewhere that it takes 6 weeks for gluten to be out of your system, so going back now after being 3 weeks in to get tested would be counterproductive, for me anyways, and would make me extremely frustrated and feel like my efforts the last few weeks were for nothing. So I'm just going to stick with it, and hope that the withdrawal symptoms clear up sooner than later. I've been craving sweets like none other today, so pretty sure that's what it is.