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At A Loss...any Ideas?


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16 replies to this topic

#1 alex11602

 
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Posted 03 May 2012 - 11:18 AM

I have been gluten free, along with my whole family, for 14 months now. After going gluten free my nightly horrible stomach pains and D stopped, but a few things got worse and some new symptoms popped up. It is getting to the point that my husband and I cannot live like this anymore, he works all day and still has to come home and do everything. I went to a new doctor a few weeks ago who ran some bloodwork (metabolic panel, CBC, A1C and TSH) everything came back normal and since I don't have insurance I can't just get random bloodwork done and he really wants me on a generic Paxil which I really don't want to take because I have had problems with SSRI meds before.

Symptoms:
Dizziness (can't even stand up for long periods of time)
Lightheadedness (pretty much constant)
Low blood pressure (every time I check it it is around 85/50)
Anxiety (social and agoraphobia)
Depression (this is not a new one for me)
Extreme fatigue (I am tired all the time no matter how much or little I sleep)
Flucuating blood sugar (mostly hypoglycemic with removal of sugar except occasional honey and most fruit)
Constipation (but will get D every once in a while)
Always cold (even when it was 80 degrees here I was cold)
Hair falling out
Terrible time of the month (bad cramps and heavy bleeding 2-3 weeks at a time)
Headaches (at least 3 times a week, mostly behind my eyes and they make me nauseous)
Soreness/ weakness (pretty much my whole body)
Brain fog (trouble concentrating, like I have fluff in my head)
Bloody nose at least once a week
Always thirsty
No sex drive
Acne
Occasional very short temper (at least once or twice a week)

What I eat now:
Chicken
Beef
Pork
Jones Sausage (in the tube maybe once a week)
Butterball Turkey Bacon (maybe once or twice a month)
Carolina White Rice
Annie Chun's Pad Thai Rice Noodles
Baby Carrots
White Potatoes
Green Beans
Broccoli
Cauliflower
Occasionally Cabbage
Synder's White Corn Chips (we buy a bag maybe once every 2 months)
Bertolli or Carapelli Extra Virgin Olive Oil
Garlic, Minced Onions, Black Pepper, Rosemary, Cumin, Cinnamon, Vanilla (All McCormick or Tone's brand)
Morton's Iodized Salt
Namaste Pancake and Waffle Mix
Blue Diamond Almonds
Almond Breeze Vanilla (I only have it when it is baked goods)
eggs
Nuts.com Almond Flour
Wesson Canola Oil (only in baked goods)
Fresh Basil that I grow
Fresh Tomatoes
Celery
occasionally use Hunt's crushed tomatoes with basil to make homemade sauce
Kraft or Sargento cheddar or mozzarella cheese
Tinkyada lasagna noodles (once every few months)
Skippy Natural Peanut Butter Creamy version
sometimes have Lindt 90% dark chocolate
honey (in baked goods)
fruit that I eat only about 2-3 times a month (to help control sugar issues) blueberries, strawberries and banana


I don't know if it could be another food intolerance or what it could be. I can't just randomly cut things out of my diet right now since I have trouble reaching 1200 calories as it is. So if anyone has ANY ideas or suggestions please let me know. Thank you!
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#2 healinginprogress

 
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Posted 03 May 2012 - 11:30 AM

Unfortunately, I don't have any ideas, but just wanted to tell you I'm dealing with similar problems. I haven't been able to return to work, it's ridiculous :angry: Have you had your TTG retested or another biopsy? My TTG is still through the roof, so everyone thinks I MUST be getting gluten somewhere, but I (like you appear to be) am VERY VERY careful! My GI has no idea and has never seen someone's TTG stay over 200 for so long while on a gluten-free diet. So, as I said, I don't have any answers, I just feel your frustration, as I'm sure people will also tell you "you must be getting gluten somewhere" :(
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#3 alex11602

 
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Posted 03 May 2012 - 11:36 AM

Unfortunately, I don't have any ideas, but just wanted to tell you I'm dealing with similar problems. I haven't been able to return to work, it's ridiculous :angry: Have you had your TTG retested or another biopsy? My TTG is still through the roof, so everyone thinks I MUST be getting gluten somewhere, but I (like you appear to be) am VERY VERY careful! My GI has no idea and has never seen someone's TTG stay over 200 for so long while on a gluten-free diet. So, as I said, I don't have any answers, I just feel your frustration, as I'm sure people will also tell you "you must be getting gluten somewhere" :(


I never had any testing done so I have no clue :( Our group of doctors diagnosed my daughters and I on resolution of symptoms and never mentioned anything about testing. I didn't know any specifics about testing until I joined this forum after going gluten free.

I really hope that you get to the bottom of your symptoms too, it is incredibly frustrating.
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#4 SleepyBunny

 
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Posted 03 May 2012 - 11:45 AM

Could be your thyroid. I have a lot of the same symptoms. Just because THEY say your TSH is normal doesn't mean squat to me anymore. Most drs aren't even looking at the new levels that have been set. What was your TSH?
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#5 alex11602

 
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Posted 03 May 2012 - 11:50 AM

Could be your thyroid. I have a lot of the same symptoms. Just because THEY say your TSH is normal doesn't mean squat to me anymore. Most drs aren't even looking at the new levels that have been set. What was your TSH?


It was 1.34. I was shocked that it was normal because even the doc said it was a textbook case of hypothyroid.
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#6 healinginprogress

 
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Posted 03 May 2012 - 11:53 AM

I suspected thyroid in my case, too, but my TSH is at 2.5. Is there a different test for parathyroid?
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#7 pricklypear1971

 
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Posted 03 May 2012 - 12:01 PM

Did they run free t3/t4? What about Hashimotos antibodies TPO Ab?

Sometimes the free levels show something is up.

If you have antibodies that's a hint too.

If the doc thinks its thyroid why not ask to try thyroid meds and see? Some docs do that and patients get results. Tsh is a crappy measure of how you feel.
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Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
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Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#8 alex11602

 
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Posted 03 May 2012 - 12:22 PM

Did they run free t3/t4? What about Hashimotos antibodies TPO Ab?

Sometimes the free levels show something is up.

If you have antibodies that's a hint too.

If the doc thinks its thyroid why not ask to try thyroid meds and see? Some docs do that and patients get results. Tsh is a crappy measure of how you feel.


No they only ran the TSH. I am going to have to make an appointment and I will ask him about those tests.
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#9 eeyorelvr

 
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Posted 03 May 2012 - 12:27 PM

I could have written that post, except I was not gluten free and I had a full body rash. The allergist ran a TPO (Thyroid Antibody) test and it came back elevated, my T3/T4 and TSH were all within normal. Kicker is TPO was only 60 and anything under 30 is normal, so although I thought it was aweful, that is very low, my son just tested at 427. Gluten free diet helped some symptoms but a lot of them didn't get better, after a little negotation with they Endo he placed me on a very low level of Synthroid and all those symptoms are gone.
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#10 Simona19

 
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Posted 03 May 2012 - 01:08 PM

What about POTS? If you can't stand long enough, this can be it. I have it. I also have some type of autonomic dysfunction when parasympathetic nervous system is somehow damaged.

Check my tread.
http://www.celiac.co...__1#entry769483

or dumping syndrome- it will make you dizzy.
http://www.celiac.co...__1#entry691535
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#11 alex11602

 
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Posted 03 May 2012 - 01:38 PM

What about POTS? If you can't stand long enough, this can be it. I have it. I also have some type of autonomic dysfunction when parasympathetic nervous system is somehow damaged.

Check my tread.
http://www.celiac.co...__1#entry769483

or dumping syndrome- it will make you dizzy.
http://www.celiac.co...__1#entry691535


Thank you for this, it is something else that I will bring up. My normal resting heartrate is about 110 and when I am standing for awhile I will check my pulse and it is closer to 180. The last dr I mentioned that too said it was just the way my body worked.
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#12 ciamarie

 
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Posted 03 May 2012 - 06:59 PM

On the DH topic area, some have mentioned they were helped by a low salicylate diet, so I looked at the list of foods and realized I was regularly eating some in the high and very high category, and still have some symptoms 6 months after being on a gluten-free diet. And I think having a low body temp. would tie into that also. So while those thyroid tests would probably be a good thing, you might want to look a the sals part of the equation, too. It made sense to me why some days my hands would actually be warm, and some days not... though I'm just a few days in to lowering the sals in my diet.

Check out message number 8 on this thread for some helpful links.
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#13 Simona19

 
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Posted 04 May 2012 - 05:21 AM

Thank you for this, it is something else that I will bring up. My normal resting heartrate is about 110 and when I am standing for awhile I will check my pulse and it is closer to 180. The last dr I mentioned that too said it was just the way my body worked.


The 180 pulse isn’t normal. Even your resting pulse of 110 is way off. My husband had the same pulse every morning when he woke up and his doctor gave him Bystolic (high blood pressure medicine) right away.

What kind of doctor is your MD, when he says to you: “it is just the way your body works”? Your pulse should be the same as your diastolic blood pressure. High pulse also means that your hearth is working very hard. If you don’t have POTS, you might have other things going on, which can be dangerous to your life. When you have a strong episode, go to ER where doctors can check your hearth for some hidden things. If everything will be normal, then you might want to consider POTS.

You need to see a cardiologist, but you need to find one that knows about Postural orthostatic tachycardia syndrome (high pulls after you will stand for wail). He should prescribe for you the Tilt table test. POTS is a new condition and not many doctors know about it. In my journey of finding what was wrong with me I learn this a very hard way (I don‘t have an insurance, and I paid a lot of money for nothing until I found the right doctor in the right hospital. The last visit cost me $600,-, but this one was worth it.). I can give you one very valuable advice: go to any University hospital, if you can. The doctors there are much younger and they would know how to treat you and what should they prescribe for you. Or call the cardiology department in that hospital and find out which doctor is doing Tilt table test and make appointment with him. If you don’t have insurance, every hospital have a special program for people in need, or you can pay with monthly payments for a long time.


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#14 alex11602

 
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Posted 04 May 2012 - 05:27 AM

The 180 pulse isn’t normal. Even your resting pulse of 110 is way off. My husband had the same pulse every morning when he woke up and his doctor gave him Bystolic (high blood pressure medicine) right away.

What kind of doctor is your MD, when he says to you: “it is just the way your body works”? Your pulse should be the same as your diastolic blood pressure. High pulse also means that your hearth is working very hard. If you don’t have POTS, you might have other things going on, which can be dangerous to your life. When you have a strong episode, go to ER where doctors can check your hearth for some hidden things. If everything will be normal, then you might want to consider POTS.

You need to see a cardiologist, but you need to find one that knows about Postural orthostatic tachycardia syndrome (high pulls after you will stand for wail). He should prescribe for you the Tilt table test. POTS is a new condition and not many doctors know about it. In my journey of finding what was wrong with me I learn this a very hard way (I don‘t have an insurance, and I paid a lot of money for nothing until I found the right doctor in the right hospital. The last visit cost me $600,-, but this one was worth it.). I can give you one very valuable advice: go to any University hospital, if you can. The doctors there are much younger and they would know how to treat you and what should they prescribe for you. Or call the cardiology department in that hospital and find out which doctor is doing Tilt table test and make appointment with him. If you don’t have insurance, every hospital have a special program for people in need, or you can pay with monthly payments for a long time.


My old primary care said it was normal and when I was pregnant and in the hospital my heart rate was over 200. A cardiologist did an EKG and said that there was no abnormal rhythm it was just really fast so it was normal for me. I will start saving up money for a visit so that I can see a different doctor.
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#15 alex11602

 
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Posted 04 May 2012 - 05:30 AM

On the DH topic area, some have mentioned they were helped by a low salicylate diet, so I looked at the list of foods and realized I was regularly eating some in the high and very high category, and still have some symptoms 6 months after being on a gluten-free diet. And I think having a low body temp. would tie into that also. So while those thyroid tests would probably be a good thing, you might want to look a the sals part of the equation, too. It made sense to me why some days my hands would actually be warm, and some days not... though I'm just a few days in to lowering the sals in my diet.

Check out message number 8 on this thread for some helpful links.


All I can say is WOW! A lot of the things that I eat are on the very high list.
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