Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Sooo Tired...

bbdailey

Recommended Posts

bbdailey Explorer
bbdailey
Posted

So Ive been gluten free since May and had my ups and downs. Lately ive been extremely tired? 11 days ago I started an elimination diet and 4 days ago I stopped taking my thyroid medication(doctor determined I didnt need it as I have normal levels and was exploring that option) To be clear I was extremely tired a couple weeks before stopping the thyroid medication. Do you think the thyroid medication could be whats making me tired and it will take time to get out of my system? Or has anyone experienced something like this during recover from celiac? I havent been this tired in a long time and Im confused since I have been gluten-free/dairy/soy free for quite a while now...

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Takala Enthusiast
Takala
Posted

Call the doctor back and report your symptoms. Do you have thyroid antibodies, you can have so- called "normal" thyroid levels and still be really messed up if it is auto immune type of thyroid disease.

What else did you eliminate from your diet ? People sometimes go overboard on that, also.

bbdailey Explorer
bbdailey
Posted
  • Author

Call the doctor back and report your symptoms. Do you have thyroid antibodies, you can have so- called "normal" thyroid levels and still be really messed up if it is auto immune type of thyroid disease.

What else did you eliminate from your diet ? People sometimes go overboard on that, also.

I do have thyroid antibodies. Last time I checked my thyroid peroxidase antibodies were 250. Back in July I started taking the thyroid medication and started and elimination diet at the same time. After about a month I actually started feeling semi-normal for the first time in a long time. Then a couple days after a colonoscopy things got extremely bad for me(severe depression) so I stopped the thyroid medication. Things got a bit better over the next month but I wanted to feel normal again so I started taking the throid medication. I was on it for 9 weeks this time with no luck(actually felt worse) so with my doctors approval I decided to stop. Im thinking that it must have been the diet that made me feel better in the first place.

As far as the elimination diet goes I am only eating chicken, fish, fresh fruit and veggies and planters peanuts.

Takala Enthusiast
Takala
Posted
... no luck actually felt worse....

You will need to call the doctor back and discuss whether you need to have your thyroid levels monitored. You also must check and make sure any and all medications you take are really gluten free. Some unscrupulous drug manufacturers are actually putting GLUTEN in some of their thyroid medications as a binder or filler and will not guarantee gluten free status from batch to batch. Some of the colonoscopy prep meds are also not gluten free. When in doubt, assume that anything that is supposed to go in you is not safe, and make the giver re - affirm the status.

With auto immune thyroid disease you cycle up and down and up and down as you burn it out, once you're permanently too low on thyroid levels, you have to stay on thyroid medications, or you will eventually die from complications caused by the missing levels, as it affects the entire body.

With the diet, if you are going grainless, you will need to eat very carefully so as to replace the missing carbohydrates or you will fatigue out. Grainless AND low starch, you need to eat small frequent meals with lots of protein and FAT, as fat is a slow burning fuel. Good fats include, but are not limited to, olive oil, coconut milk and oil, avocado, nuts, nut milks, eggs, seeds, for some people butter or ghee and cheese, etc. Grainless and with starch, you would be eating more starchy vegetables to replace the missing grains, such as potatoes, sweet potatoes, beans, fresh or canned sweet corn, perhaps some forms of gluten free tapioca, etc.

bbdailey Explorer
bbdailey
Posted
  • Author

Thanks Takala! Im thinking that the thyroid antibodies are more so from the celiac. I havent been formally diagnosed with celiac and I have been diagnosed with Hashimotos. That being said the doctor diagnosed me from APO antibodies(200) only. I have no goiters or nodules...my thyroid is not swollen...I am certainly not overweight(actually need to gain some)...and I am a 23 year old male. I had very severe symptoms and once cutting out gluten they started to simmer....the main issues Im trying to get over now are the fatigue, brain fog and depression(these symptoms were 20x worse b4 going gluten free.)

Does this sound like celiac disease could have caused some antibodies to be found in the thyroid?

I believe its celiac because like I said my thyroid levels are normal and I know that you can still have symptoms in the "normal range" but I dont think they would cause the severity of symptoms that I have experienced.

Takala Enthusiast
Takala
Posted

Celiac is notorious for causing other diseases, like Hashimoto's auto immune thyroid disease, which then usually gets diagnosed first. There is a sexual bias perception with physicians, they don't mean to most of the time, but if you're the less likely sex to get a disease, they tend to blow you off. Auto immune disease like celiac is more common in women, and I think the average time of length from complaint to diagnosis was 11 years.... You're lucky you at least have that thyroid diagnosis.

pain*in*my*gut Apprentice
pain*in*my*gut
Posted

So Ive been gluten free since May and had my ups and downs. Lately ive been extremely tired? 11 days ago I started an elimination diet and 4 days ago I stopped taking my thyroid medication(doctor determined I didnt need it as I have normal levels and was exploring that option) To be clear I was extremely tired a couple weeks before stopping the thyroid medication. Do you think the thyroid medication could be whats making me tired and it will take time to get out of my system? Or has anyone experienced something like this during recover from celiac? I havent been this tired in a long time and Im confused since I have been gluten-free/dairy/soy free for quite a while now...

You say that your thyroid levels are normal....have you had ALL of your thyroid hormones checked? Many docs will only test your TSH and not free T4 and T3. Your TSH can be "normal", but your T4 and T3 can be low.

Additionally, many docs go by the old reference range for TSH (upper limit of 4.5 or 5 being normal), but in 2003 the American Association of Clinical Endocrinologists recommended the upper limit to be lowered to 3. Technically, I have been hypo for several years now...too bad my doc had no clue about the new range for TSH. :angry: I am on Synthroid now and starting to shake the constant fatigue.

My doc said it takes several weeks (at least 6) to months to get the full benefit of thyroid hormone supplementation. Are you sure you have given the meds enough time to work? If you have Hashi's, it might take some adjusting to get things just right.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


bbdailey Explorer
bbdailey
Posted
  • Author

I have had all the thyroid tests done. TSH last time was 2.2 and FT3 and FT4 were in the normal range. Like I said the first time I took the thyroid medication I started an elimination diet at the same time. About a month later I began to feel noticably better so I figured it was either the diet or medication(obviously). I then went off the medication due to feeling extremely bad about a week after my colonoscopy and went a month feeling pretty off. So I decided to take the medication again...same dose,50, and same brand, levothyroxine. This time I was on it for 9 weeks and didnt feel any better. I noticed feeling anxiety, fatigue, more constipation. So my doctor and I decided to stop the medication since it wasnt helping.

My thinking is that the first time I was feeling better due to the diet? Does this make sense?

Like I said Ive been diagnosed with Hashimotos and not Celiac but Im thinking that I have celiac and it caused the hashimotos. I had extreme symptoms both physically and mentally. I went for almost 6 months without being able to use the bathroom basically...and when I cut out gluten I slowly started to get back to normal. This would seem to be celiac right? I know I have hashimotos but Im not even hypothyroid yet so would you think all the digestive issues and mental/cognitive issues would be more likely to be linked to celiac over the thyroid?

bbdailey Explorer
bbdailey
Posted
  • Author

This is a shot in the dark but does anyone think it could be mono? Ive been so tired lately and cant shake it!

pricklypear1971 Community Regular
pricklypear1971
Posted

Ok, let me see if I have this straight...

You were dx'ed with Hashis and have hypo symptoms (which can also be Gluten) but your thyroid test results are normal (except TPO)?

You have felt alternately better/worse while on the diet but vacillate on taking the thyroid meds?

Well, if going gluten-free helped then keep it up. It is thought gluten problems causes Hashis antibodies. If your test results for thyroid are normal, and meds don't help it could be a few things - 1) you don't need meds 2) you're on the wrong meds 3) you need to be on them longer and at a different dose.

I suggest reading on About.com's thyroid section. Lots of good info there.

Are you still off soy/milk/gluten free? Have you taken steps to prevent cc at home and when you're out?

pricklypear1971 Community Regular
pricklypear1971
Posted

This is a shot in the dark but does anyone think it could be mono? Ive been so tired lately and cant shake it!

There's a test for that!

bbdailey Explorer
bbdailey
Posted
  • Author

Ok, let me see if I have this straight...

You were dx'ed with Hashis and have hypo symptoms (which can also be Gluten) but your thyroid test results are normal (except TPO)?

You have felt alternately better/worse while on the diet but vacillate on taking the thyroid meds?

Well, if going gluten-free helped then keep it up. It is thought gluten problems causes Hashis antibodies. If your test results for thyroid are normal, and meds don't help it could be a few things - 1) you don't need meds 2) you're on the wrong meds 3) you need to be on them longer and at a different dose.

I suggest reading on About.com's thyroid section. Lots of good info there.

Are you still off soy/milk/gluten free? Have you taken steps to prevent cc at home and when you're out?

I was diagnosed with Hashimotos and have symptoms that could be either from hypo or celiac. I believe it is celiac because I am not overweight and not yet hypo(my labs are normal).

Heres what happened: I was having terrible symptoms both physically and mentally and all the doctors said that I was crazy until I finally(after 7 months) got the endo to do an APO test that came up positive(200). He then prescribed me 50 levothyroxine and said I dont think this will help your symptoms at all. So I ended up buying and reading a book by Dr. K about the thyroid and started to cut out gluten. The physical symptoms started to go away and the mental symptoms started to simmer(I wasnt having panic attacks or Severe Depression) but I was still not feeling right. So after being gluten free for 2 months I went through a tough personal issue and decided I needed to fix myself ASAP so I started taking the thyroid medication along with a 2 week elimination diet. After I finished the elimination diet I figured I should cut out dairy and soy as well. Within a month I started to feel better(still not 100%) and actually got a glimpse of normality for the first time in a long time. Later that month I had a colonoscopy and about 5 days after it I became VERY depressed. So depressed I decided to stop the thyroid medication because I had no other lead as to what could be causing it. After about 2 weeks the severe depression had gone but I was still having major brain fog and not feeling well. So after a month of being of the thyroid pill I decided to try it again. This time I was on it for 9 weeks and actually probably felt a bit worse. So I ended up stopping and am trying to just stick with a strict diet. All the medication did was make me anxious, gave me really bad acne on my back, and made me constipated. So Im thinking that perhaps the medication has set me back in my recovery?

To answer your questions: I have felt progressively better being off of gluten(slowly but surely) until I threw the thyroid medication into the mix. Like I said I felt pretty good after being on the medication the first month-month in a half(Aug) but since then I havent felt very well.

Also Id like to add that after I became severly depressed after the colonoscopy I depended on my mother to cook meals for me and I also was eating a lot of processed "gluten free" foods that may have had some CC issues.

I have been of gluten since May. Dairy and soy since Aug. And just recently 2 weeks ago started that elimination diet that basically cuts everything out like corn/eggs/etc. Also I have been very careful trying to avoid CC. I believe I may have not been getting better when my mother was doing the cooking because of possible CC but starting 2 weeks ago I have been cooking everything and have been very careful.

pricklypear1971 Community Regular
pricklypear1971
Posted

Well, it sounds like you need to stock with something for a month and see what happens. I know you're desperate to feel better.

One thing you may look into is depression triggered by anesthesia. My step- grandfather goes into depression for 6 months every time he has it, and he also has thyroid disease. It may have just been unfortunate timing on that one.

bbdailey Explorer
bbdailey
Posted
  • Author

I wondered if it was the anesthesia but I had an endoscopy 3 weeks before that and felt fine afterwards. I also wondered if the colonoscopy prep could have done it but its weird to me that the depression didnt come until almost a week after? Thats why I think it could possibly be the thyroid medication or maybe a combination of the two.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,904
    • Most Online (within 30 mins)
      7,748
    AnneSN
    Newest Member
    AnneSN
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Xravith
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By Xravith · Posted

      Yes, you are right. Indeed, I’ve been feeling anemic since the beginning of this week, and today I felt horrible during a lecture at the university, I was trembling a lot and felt all my body incredibly heavy, so I had to come back home. I’ll do a blood test tomorrow, but I’m just worried about the possibility of it coming back negative. I’ve been eating two cookies in the morning as my only source of gluten over the past two weeks—could that affect the final result?
    • trents
      New (possible) celiac diagnosis

      By trents · Posted

      Welcome to the forum, @Judy M! Yes, he definitely needs to continue eating gluten until the day of the endoscopy. Not sure why the GI doc advised otherwise but it was a bum steer.  Celiac disease has a genetic component but also an "epigenetic" component. Let me explain. There are two main genes that have been identified as providing the "potential" to develop "active" celiac disease. We know them as HLA-DQ 2.5 (aka, HLA-DQ 2) and HLA-DQ8. Without one or both of these genes it is highly unlikely that a person will develop celiac disease at some point in their life. About 40% of the general population carry one or both of these two genes but only about 1% of the population develops active celiac disease. Thus, possessing the genetic potential for celiac disease is far less than deterministic. Most who have the potential never develop the disease. In order for the potential to develop celiac disease to turn into active celiac disease, some triggering stress event or events must "turn on" the latent genes. This triggering stress event can be a viral infection, some other medical event, or even prolonged psychological/emotional trauma. This part of the equation is difficult to quantify but this is the epigenetic dimension of the disease. Epigenetics has to do with the influence that environmental factors and things not coded into the DNA itself have to do in "turning on" susceptible genes. And this is why celiac disease can develop at any stage of life. Celiac disease is an autoimmune condition (not a food allergy) that causes inflammation in the lining of the small bowel. The ingestion of gluten causes the body to attack the cells of this lining which, over time, damages and destroys them, impairing the body's ability to absorb nutrients since this is the part of the intestinal track responsible for nutrient absorption and also causing numerous other food sensitivities such as dairy/lactose intolerance. There is another gluten-related disorder known as NCGS (Non Celiac Gluten Sensitivity or just, "gluten sensitivity") that is not autoimmune in nature and which does not damage the small bowel lining. However, NCGS shares many of the same symptoms with celiac disease such as gas, bloating, and diarrhea. It is also much more common than celiac disease. There is no test for NCGS so, because they share common symptoms, celiac disease must first be ruled out through formal testing for celiac disease. This is where your husband is right now. It should also be said that some experts believe NCGS can transition into celiac disease. I hope this helps.
    • Judy M
      New (possible) celiac diagnosis

      By Judy M · Posted

      My husband has had lactose intolerance for his entire life (he's 68 yo).  So, he's used to gastro issues. But for the past year he's been experiencing bouts of diarrhea that last for hours.  He finally went to his gastroenterologist ... several blood tests ruled out other maladies, but his celiac results are suspect.  He is scheduled for an endoscopy and colonoscopy in 2 weeks.  He was told to eat "gluten free" until the tests!!!  I, and he know nothing about this "diet" much less how to navigate his in daily life!! The more I read, the more my head is spinning.  So I guess I have 2 questions.  First, I read on this website that prior to testing, eat gluten so as not to compromise the testing!  Is that true? His primary care doctor told him to eat gluten free prior to testing!  I'm so confused.  Second, I read that celiac disease is genetic or caused by other ways such as surgery.  No family history but Gall bladder removal 7 years ago, maybe?  But how in God's name does something like this crop up and now is so awful he can't go a day without worrying.  He still works in Manhattan and considers himself lucky if he gets there without incident!  Advice from those who know would be appreciated!!!!!!!!!!!!
    • Scott Adams
      Patiently Waiting to See Results

      By Scott Adams · Posted

      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
    • Scott Adams
      Gluten free beer ?

      By Scott Adams · Posted

      In this case the beer is excellent, but for those who are super sensitive it is likely better to go the full gluten-free beer route. Lakefront Brewery (another sponsor!) has good gluten-free beer made without any gluten ingredients.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.