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Lost

beth01

By beth01
in Coping with Celiac Disease

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beth01 Enthusiast
beth01
Posted

I'm at a loss.  I still haven't been feeling well and it's been over a year since my diagnosis.  I have recently gotten new doctors, moved to a different hospital, so I had all my yearly labs drawn from a new doctor.  My vitamin levels are all normal, barely, but normal.  My antibody levels have flat out stalled since I had them drawn in August.  They haven't gone down or up.  My new GI seems to think I'm some how getting glutened.  My daughter and I eat all the same foods, use all the same products and her antibodies are completely normal, the only thing different is I take Thyroid medication which I have called on and am told it's gluten free.  I never go out to eat, barely eat anywhere but home.  I don't feel like I'm getting glutened, even low level cc usually makes me get headaches, brain fog, the whole gamut.  Have I just not given it enough time?  I'm still losing weight, not nearly as fast as I was before, but still losing it.  My energy levels are next to nothing ( TSH is normal) and I'm dizzy all the time, fainting a few times a week.  My boyfriend and I have been over our house multiple times and find nothing.  I guess I'm just lost on where to even start looking.

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Jays911 Contributor
Jays911
Posted

Thyroid medicine us my guess. Maybe try a substitute.

mamaw Community Regular
mamaw
Posted

There are others  just like you in the celiac  world...If  the thyroid  med is  synthroid  I would  ask to  try  another... Do you  have  pets  ? If  so  through the  years  I have seen  many  sensitive  celiac  get  relief  by  going  pet gluten-free...bird food  as well.

Does  your  BF eat  wheat?  Does he  brushing his teeth  before  kissing  you?  I know  these  are   far out  there  for many  but  for  very sensitive  it  truly matters.....

Do you work outside  the home? Do you react  to other  foods  besides  gluten ones?

Have you tried  digestive  enzymes  ? I know  there  is a big warning about  probiotics now  but  I  would  look  for one & give  it a  try.... I'm  sure  some  are  not  as safe as  others....

One  more  thought  is  do  you  eat  products  that  have  the under 20 ppm ?  Again  sensitive  celiac  can not  eat  these  products... We  have  a  young  person  who  can't tolerate  the 20ppm.....

Just  thoughts to consider  .. I  hope  you find  answers  soon.

bartfull Rising Star
bartfull
Posted

It took me a lot longer than a year to feel better. I was having dizzy spells too. I remember one time (at somewhere around two years gluten-free) I was at the grocery store and I had to lie down on the floor because I knew I was going to pass out and didn't want to crack my head. It could just be that you had it longer than your daughter and so are taking longer to get better.

 

That being said, it IS a good idea to check on the things the other posters have mentioned.

icelandgirl Proficient
icelandgirl
Posted

Hi Beth...I'm so sorry you are having such a rough time still. ((((Hugs))))

A few things...If you get generic thyroid medicine it can vary who makes it each time. My endo switched me to name brand Levoxyl for consistency and it is gluten free.

When you say your TSH is normal, what is your #? Also, have they checked free T3 and free T4? Those tell much more about the state of your thyroid. That being said...according to my lab normal for TSH is .45-4.5, but I start to feel hypo when it gets over 2. I feel best between 1 and 1.5. Just something to think about.

Are your celiac antibodies in the normal range now or still above? If they are still above, maybe look at all supplements you are taking?

And don't give up hope! Whenever I feel down about where I am I look at bartfull and remind myself that it can take more than a year or 2.

(((hugs)))

beth01 Enthusiast
beth01
Posted
  • Author

I'm on Synthroid because the name brand wasn't doing anything for my thyroid levels, I have called on my pills and they told me it was gluten free.   My pets have been gluten free for almost as long as I have been, besides the fish, but my boyfriend feeds them and is very meticulous about keeping things clean while he does it.  He has been gluten free also, so I don't have to worry about him cc'ing me.  My antibody levels have been hovering just above the normal range since August, they don't go up or down, just stays the same.  It's just frustrating feeling like crap all the time and trying to figure out where it's coming from.  I went crazy and quit taking all my pills that I was on except my thyroid meds, my previous doctors had me taking about 23 pills a day, seemed excessive to me, and my new doctor said most of them were completely unnecessary, so at least I don't have a ton of pills to go through.  I have called on my probiotics, they are made in a dedicated facility, gluten free, but with the latest news going around about them, who knows.  These dizzy/fainting spells happen about 25 times a week ( only fainting a few times, but dizzy all the time). I got a care coordinator at the new clinic I'm going to and she seems to think I need to wear a 30 day Holter monitor, maybe my heart was affected by all the weight I've lost due to absorption issues.  I think I need a vacation from celiac.  Sitting at home is making me stir crazy too, haven't been able to go back to work yet, I don't think they would appreciate an employee that has to nap every day. lol.  Just sick and tired of being sick and tired.

mamaw Community Regular
mamaw
Posted

The holter monitor  is a good idea...has  anyone  ever  checked  your  cortisol levels? Inner   ear  ?   Blood  sugar?

I'm sure that  their  are  hundreds  of celiac  that  also  would love a break from  celiac...you  are  not  alone....

I'm not a lover of  synthroid   .......would  your  doc  prescribe  another  brand?

 

I sure hope  you get  an answer soon....

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icelandgirl Proficient
icelandgirl
Posted

I thought synchroid was not gluten free? I could be misinformed though. Have you checked the rest of your thyroid levels? Holter monitor might be needed. Kind of a pain. I had to wear one once a few years ago for a week. My problems turned out to be related to synthroid and switching meds fixed those.

I understand the feeling of being sick and tired of being sick and tired. I hope for you that things improve.

RMJ Mentor
RMJ
Posted

Does your boyfriend eat gluten? Does he brush his teeth before kissing you?

squirmingitch Veteran
squirmingitch
Posted

She stated her boyfriend is gluten free so no chance of him cc'ing her.

 

beth01, has your glucose been checked? IOW, have they checked you for diabetes or low blood sugar?

 

No doubt you've been researching but have you read this?

Open Original Shared Link

and this

Open Original Shared Link

 

I also Googled your 3 main symptoms & found this
Open Original Shared Link

 

It does seem a heart monitor would be a good idea.

nvsmom Community Regular
nvsmom
Posted

My guess is your thyroid isn't treated well enough yet.  Having low free T3  can throw a body off.

 

Which antibody tests were abnormal?  Was it the tissue transglutaminase? Hashimoto's can elevate that results of that test.  I know I was still testing abnormal, and not feeling great, at 9 months gluten-free, but by 3 years gluten-free my tests were all normal. Switching to natural desiccated thyroid helped me, but it isn't for everyone.

 

Do you have postural hypotension?  I've had that since childhood, and even had a doctor put me on steroids for it. I remember getting up (from playing on the floor) and seeing how far across the house I could walk before my vision returned and I wasn't stumbling anymore.  LOL :rolleyes:   Funnily enough, it has REALLY decreased in frequency over the last 6 months (2.5 years gluten-free) to the point where it rarely happens in a week.  Hang in there as it may still go away.

 

Keep at it, it's all you can do.  (hugs)  Chances are that it will get better.

beth01 Enthusiast
beth01
Posted
  • Author

The postural hypotension sounds interesting Nicole.  My blood pressure usually plummets during these little "episodes".  They had me rest, sit, lay down and tested my blood pressure after each, but my pressures were high to begin with after having an awful doctor visit that I drove over and hour and a half to for them to tell me there wasn't anything they could do for me, I was having a litter of kittens by the time they took my blood pressure.

 

My tissue transglutaminase IgA is still abnormal.  My TSH is still a little higher than I would like it, it's normal.  I'm going to call again on my thyroid meds in the morning and see what I can figure out there.  I might just switch back to the thyroxine, but then I have to take a much higher dose since I don't absorb it as well.  Why can't they just quit putting allergens in every damn thing?  lol  I don't have Hashi's, I have/had Grave's.  I have heard of people that have both, but I don't know too much about that, and I had radioactive iodine for my thyroid so I don't think it's doing much on it's own.

 

If it's not my thyroid meds, I'm going to ask for the holter monitor.  I'm also going to ask if I can get a glucose meter so I can check blood sugars while this happens, along with blood pressures.  I don't want to do the 30 days and then have them say, wish we had this information.  I have an appointment with Rheumatology, but that isn't until October 1st.   Just got to wait it out.  Or, I'm just jumping the gun thinking I should be feeling better than I am, it's not like my body ate itself from the inside out for two years or anything lol.

beth01 Enthusiast
beth01
Posted
  • Author

The Synthroid is gluten free, according to the pharm company that makes it.  They now put powdered sugar in as an ingredient, but it's gluten free lol

GFinDC Veteran
GFinDC
Posted

Hi Beth,

 

I don't remember if you had done an elimination diet?   Even if you have, it might be a good idea to try another one.  Gluten isn't the only food that can make us sick.  We can develop reactions to many different foods.  Another thing to try might be eating Brazil nuts.  Someone suggested that to me a while back and it helped my energy levels a lot.   They have a lot of selenium in them.   A couple a week is plenty if you are deficient.  Too many is not good though.

beth01 Enthusiast
beth01
Posted
  • Author

l'm also soy free, dairy free, and egg light.  I'm mostly whole foods besides that. 

cyclinglady Grand Master
cyclinglady
Posted

You can get a cheap meter at Walmart and some strips for less than $40 if you want to keep track of your blood sugar if your doctor will not issue one. Take your fasting in the morning and then test 1 and 2 hours after the first bite of food. It is not as accurate as a lab, but it can track a trend.

nvsmom Community Regular
nvsmom
Posted

The postural hypotension sounds interesting Nicole.  My blood pressure usually plummets during these little "episodes".  They had me rest, sit, lay down and tested my blood pressure after each, but my pressures were high to begin with after having an awful doctor visit that I drove over and hour and a half to for them to tell me there wasn't anything they could do for me, I was having a litter of kittens by the time they took my blood pressure.

 

My tissue transglutaminase IgA is still abnormal.  My TSH is still a little higher than I would like it, it's normal.  I'm going to call again on my thyroid meds in the morning and see what I can figure out there.  I might just switch back to the thyroxine, but then I have to take a much higher dose since I don't absorb it as well.  Why can't they just quit putting allergens in every damn thing?  lol  I don't have Hashi's, I have/had Grave's.  I have heard of people that have both, but I don't know too much about that, and I had radioactive iodine for my thyroid so I don't think it's doing much on it's own.

 

If it's not my thyroid meds, I'm going to ask for the holter monitor.  I'm also going to ask if I can get a glucose meter so I can check blood sugars while this happens, along with blood pressures.  I don't want to do the 30 days and then have them say, wish we had this information.  I have an appointment with Rheumatology, but that isn't until October 1st.   Just got to wait it out.  Or, I'm just jumping the gun thinking I should be feeling better than I am, it's not like my body ate itself from the inside out for two years or anything lol.

To test for postural hypotension, lay down for about 5 minutes and take your blood pressure, then stand up and immediately take your blood pressure while standing.  If you have postural hypotension your blood pressure will fall for the second reading while you are standing.  For most people, when they stand, their blood pressure will increase; dropping BP is not normal.

 

A doctor can test it, or you can get a blood pressure cuff at Walmart too.

 

Graves, eh?  Nasty!  :(  

Is your TSH near a 1?  I know that I was still quite hypo when my TSH was over a 2, and my FT3 was near the bottom of the normal range whereas it should be in the 50-75% range of the lab's normal range.  To get my FT3 into that sweet spot, I needed to switch to something with T3 (natural desiccated thyroid in my case).  Getting my FT3 up made me feel better but my TSH is now suppressed and very close to zero... I feel good even though it makes some doctors nervous.  LOL

 

Hopefully you are still just healing.... Darn slow disease.  Sigh. Hang in there.

 

Let us know how it goes with the monitor and such.  Best wishes.

Galixie Contributor
Galixie
Posted

There is a really large gray area with vitamin B12 where symptoms of deficiency can occur even though the lab result says normal. A typical reference range for serum B12 is 200-1000. Symptoms, which can include fatigue, dizzy spells, and fainting (as well as others), can occur in levels below 400. If the problem is not with your thyroid, you might check into whether B12 is the culprit.

frieze Community Regular
frieze
Posted

Open Original Shared Link

are you truly dizzy, or perhaps the above.??

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