New Here - Debating Going Gluten-free - Opinions Anyone?

[angelschick]

I will try and keep this short. Since June I have been to multiple Doctors trying to figure out what is wrong with me, have spent so much money I cannot even type it and wasted so much time and energy - I am very sad. So - any help would be a welcome addition :-)

Symptoms -

Odd rash (NOT DH, non-itchy) red/pink on chin and also a malar rash - pale pink when im in the usn for just a minute or two

Gas and bloating, horrible cramps - often when eating after about 3 PM

PAINFUL BM's, often constipated or MILD D

Fatigue - lots of it

Joint pain no visible swelling ever- mostly back but hips, knees, hands and ankles

NO sex drive

DRY hair - like straw

NO stamina most days - slight activity will wear me out

Good days and bad days

Dizzy when I stand up at times

Vision seems to be deteriorating despite Docs saying my prescription isn't changing

Health history -

Diagnosed Hashimoto's about 5 years ago

Otherwise healthy

Labs -

LOW cholesterol (total is 83) for at least 6 years

Vit D fine

Iron high

Endomysial antibody negative

Lupus, RA antibodies negative

EVERYTHING seems to be fine as far as bloodwork goes

X-Rays of hand show NOTHING, low back MRI shows mild deterioration but not worthy of my pain

Any ideas? I am tired of Doctors. I am tired of spending 20% of every lab known to man only to have them say they don't know what's wrong with me. I am now unable to work due to fatigue and pain. I am toying with trying the gluten free diet, but don't want to have to end up doing a challenge test or something down the road.

Thanks in advance

Amy

[ravenwoodglass]

Hi Amy and Welcome, I know how tiresome doctor can be and the search many of us go through can be quite frustrating and disheartning. You should consider asking for one more set of tests though, the full celiac panel. Your doctor should be able to just call in a lab slip for it or have you pick one up at the office. After you have the blood drawn then you have a choice, you can hold off on starting the diet if you are going to want a endoscopic exam and biopsy, which the doctor will want if you come back positive. Or you can start the diet strictly and see if it helps. I would advise at least getting the blood tests though, in the event that they are positive all of your first degree relatives should also be tested. Many times it is hard to convince them to do that if you don't have a diagnosis. If you live in a mixed gluten and gluten free houshold it can also be easier to get others to comply with the strict CC precautions that we need if you have a diagnosis.

[Mother of Jibril]

Odd rash (NOT DH, non-itchy)

Malar rash - pale pink when im in the sun for just a minute or two

Gas and bloating, horrible cramps

PAINFUL BM's, often constipated or MILD D

Fatigue - lots of it

Joint pain no visible swelling ever- mostly back but hips, knees, hands and ankles

NO sex drive

DRY hair - like straw

NO stamina most days - slight activity will wear me out

Good days and bad days

Dizzy when I stand up at times

Vision seems to be deteriorating despite Docs saying my prescription isn't changing

Hi Amy,

I'm amazed at the similarities between us! Your list of symptoms is almost EXACTLY like mine before I stopped eating dairy, gluten, and corn. I decided to give it a try after I was diagnosed with autoimmune hypothyroidism and I kept reading about connections with gluten intolerance. I was already off dairy (my eight-month-old son... who I'm breastfeeding... is very sensitive to casein), but going off gluten made a HUGE difference. Within 48 hours most of the cramps, bloating, gas, and joint pain were gone (going off corn took care of the rest). My dermatologist diagnosed my facial rash as rosacea (I'm also sensitive to sun and wind) and the prescription she gave me for Finacea helped too.

The best thing is that my energy level is definitely picking up! And my moods are stabilizing! At my worst I was severely depressed and had to take a medical leave from my job for three months. I was SO tired... I could hardly get myself off the couch, even to take care of my daughter (who was a toddler at the time). I'm still waiting for my libido to pick up... and I'm planning to make an appointment with an eye doctor soon, but otherwise all of my other symptoms are pretty much gone as long as I stay off those three foods!

You said that your endomysial antibodies were negative... were you also checked for tissue transglutaminase and total IgA? If your IgA is too low you can have severe celiac disease and still get a negative blood test.

Otherwise... I would highly recommend the gluten-free diet! Welcome to the group.

[ShayFL]

I have nothing to add other than I tested NEG on bloods, refused biopsy, did Enterolab genetics and discovered I have 2 gluten intolerance genes. Went on the gluten-free diet and have never looked back. I will never eat it again. Gone are the migraines and dizziness. Gone!!

You do not need a doctor's permission to go on the diet.

[gfpaperdoll]

Angelschick, High Iron? Please get checked for Hemochromatosis, that is too much iron in your blood & can damage other organs including the heart. End stage of this if untreated, is that your skin will be reddish to yellow, then it kills you. My paternal Uncle died of this 50 years ago.

The only treatment needed is blood draws under care of a doctor. Usually the only people that have it, well as far as I have ever heard, also have celiac disease.

what happens is when you have celiac it keeps the iron lower, sometimes. But if you go gluten-free that check point is out & the iron gets higher. If you have Hemochromatosis I do not think you are supposed to eat beef or cook out of cast iron skillets.

If you do have Hemochromatosis you can trace your ancestry back to the Vikings/Celtics.

Any Irish in your family? Any red heads?

oh & I second whatever Ravonwoodglass said, although I did not have time to read her post!

[Mother of Jibril]

One other thought...

You said your total cholesterol is 83. What is your HDL? 35 is the recommended lower limit, but 50 or higher is best for good health. Have you ever tried flax oil or fish oil for omega 3s? Other good sources include salmon, hemp, walnuts, and organic eggs. That could help with your fatigue and lower back pain.

gfpaperdoll -

That's interesting about hemochromatosis. I do have some Celtic ancestry. My iron has always been low... but that was before the gluten-free diet. Right now it's normal. I'll have to keep an eye on that!

[angelschick]

"were you also checked for tissue transglutaminase and total IgA? If your IgA is too low you can have severe celiac disease and still get a negative blood test."

No. He said this one test was sufficient.

"You said your total cholesterol is 83. What is your HDL? 35 is the recommended lower limit, but 50 or higher is best for good health. Have you ever tried flax oil or fish oil for omega 3s? " My HDL is 32, LDL is 38. I have tried fish oil but it didn't make it go up. Doctors seem to think it's good my cholesterol is so low - I think it's nor normal, not given the way I eat.

"Angelschick, High Iron? " I should have clarified, I just meant anemia is not a problem for me. My hemoglobin is 14.6 (11.7-15.5), hematocrit 42.5 (35-45) It's always been like that, if my hemoglobin is below 12 or so I FEEL anemic.

"If you do have Hemochromatosis you can trace your ancestry back to the Vikings/Celtics.

Any Irish in your family? Any red heads?" I am adopted so no real clue on history but I am pale faced with redish hair.

Thanks!

Amy

[Mother of Jibril]

That really is low cholesterol! And it might explain some of your symptoms, since cholesterol is needed for:

1. Formation and maintenance of cell membranes

2. Formation of sex hormones (progesterone, testosterone, estradiol, cortisol)

3. Production of bile salts, which help to digest food

4. Production of vitamin D during exposure to the sun

Having low LDL is great, but low HDL puts you at risk for heart disease. What is your normal diet like? My HDL used to be 34, but I raised it to 55 by eating a lot of healthy fats... olive oil, nuts, lean meat, eggs, etc... How is your weight? Do you smoke? I'm sure exercise is very difficult when you're so tired all the time.

A found the book "Ultraprevention" to have really good advice about issues like this.

[ShayFL]

According to a web page on cholesterol testing from the the Discovery Health Channel, abnormally low levels of cholesterol may indicate:

*

hyperthyroidism, or an overactive thyroid gland

*

liver disease

*

malabsorption

*

inadequate absorption of nutrients from the intestines

*

malnutrition

Manganese deficiency has also been linked to low cholesterol levels (hypocholesterolemia).

The BBC news reported in 1999 that low cholesterol levels were linked, in both men and women, to depression and anxiety. In a separate story on the same topic, MSNBC reported that, a study conducted in South Korea found that depressed patients with low cholesterol levels may be more likely to commit suicide.

The CNN web site has an article on low cholesterol that reports that people with cholesterol below 180 had twice the risk of hemorrhagic stroke over people with cholesterol levels at 230.

[ShayFL]

A person can have both Hashi's and Graves disease at the same time. Your symptoms are a little of both. Have they tested you for BOTH thyroid antibodies?

How are they treating your Hashi's? Hashi's is different than other types of hypothyroid. The goal is to suppress the TSH to stop the attack and to eliminate symptoms. Sadly many doctors just get their patients into the "normal" range and people continue to suffer for years.

I was not well until my TSH was suppressed .08 on Armour.

What are your most recent thyroid labs like?

[angelschick]

My thyroid labs are not so good right now. I was forgetting my meds (3 grain of Armour daily) when the last test was taken. Here are my numbers -

10/20/08 (not taking meds daily, forgetting)

free T3 - 426 (230-420)

TSH - 3rd generation - 1.51 (.40-4.50)

Free T4 - 1 (.8-1.8)

7/24/08 (On meds but feeling way worse - joint pain mostly) than on 10/20/08)

TSH - .680 (.47-4.50)

Free T4 - 1 (.7-1.9)

Total T3 - 1.18 (.51-1.65)

T3RU - 243 (90-350)

When I was diagnosed Hashi (5/2/05)

Thyroid peroxid was >1300 (0-60)

Put on Synthroid

10/25/05

Thyroid peroxidase - 820 (<2)

Anti-throglobulin antibody 62 (<2)

Put on Armour

So it does not look like I was tested for Graves does it?

As far as my cholesterol goes - I have read how dangerous it can be and no Doctor seems worried - they tell me I am blessed. I hate to admit but I eat like crap lotsa fat in my diet. I do not exercise at all and am overweight by about 40 pounds.

THANKS!

Amy

THANKS!

[Mother of Jibril]

Actually, your thyroid labs from 10/20/08 look pretty good! Free T3 above the normal range and Free T4 in the mid-normal range. But... I've read that if you still have an antibody attack going on, these numbers are not very helpful. How do you feel thyroid-wise?

Having fat in your diet is not a bad thing Seriously. What matters is the type of fat. "Trans" fats are the worst because that chemical structure doesn't exist in nature and your body doesn't know what to do with it. Saturated fats are not great (fatty red meat, pork, dairy products). Olive, flax, and walnut are actually good oils... there's no reason to avoid them. Small amounts of canola, sesame, almond, etc... are fine too, but do avoid soybean, corn, and "vegetable" (cottonseed) oil. Coconut oil has some beneficial properties for people with thyroid problems.

I was really surprised that I was able to lose weight by eating more fat and less carbs. I always thought peanut butter sandwiches made me gain weight... turns out it was the bread, not the peanuts that were the problem!

[angelschick]

Thyroid wise I feel pretty good but I definitely feel better with my TSH below 1. I just went shopping and am plunging in to the gluten-free diet tomorrow AM. I had lasagna for dinner and man did I feel it. So - we shall see. My menu plan is so boring but budgetary reasons win over taste buds sometimes.

Thanks again for all the good advice and support!

Amy

[Kathy in Alaska]

Have you considered being tested for Porphyria?

===========================================

I will try and keep this short. Since June I have been to multiple Doctors trying to figure out what is wrong with me, have spent so much money I cannot even type it and wasted so much time and energy - I am very sad. So - any help would be a welcome addition :-)

Symptoms -

Odd rash (NOT DH, non-itchy) red/pink on chin and also a malar rash - pale pink when im in the usn for just a minute or two

Gas and bloating, horrible cramps - often when eating after about 3 PM

PAINFUL BM's, often constipated or MILD D

Fatigue - lots of it

Joint pain no visible swelling ever- mostly back but hips, knees, hands and ankles

NO sex drive

DRY hair - like straw

NO stamina most days - slight activity will wear me out

Good days and bad days

Dizzy when I stand up at times

Vision seems to be deteriorating despite Docs saying my prescription isn't changing

Health history -

Diagnosed Hashimoto's about 5 years ago

Otherwise healthy

Labs -

LOW cholesterol (total is 83) for at least 6 years

Vit D fine

Iron high

Endomysial antibody negative

Lupus, RA antibodies negative

EVERYTHING seems to be fine as far as bloodwork goes

X-Rays of hand show NOTHING, low back MRI shows mild deterioration but not worthy of my pain

Any ideas? I am tired of Doctors. I am tired of spending 20% of every lab known to man only to have them say they don't know what's wrong with me. I am now unable to work due to fatigue and pain. I am toying with trying the gluten free diet, but don't want to have to end up doing a challenge test or something down the road.

Thanks in advance

Amy

[nasalady]

Symptoms -

Odd rash (NOT DH, non-itchy) red/pink on chin and also a malar rash - pale pink when im in the usn for just a minute or two

Gas and bloating, horrible cramps - often when eating after about 3 PM

PAINFUL BM's, often constipated or MILD D

Fatigue - lots of it

Joint pain no visible swelling ever- mostly back but hips, knees, hands and ankles

NO sex drive

DRY hair - like straw

NO stamina most days - slight activity will wear me out

Good days and bad days

Dizzy when I stand up at times

Vision seems to be deteriorating despite Docs saying my prescription isn't changing

Health history -

Diagnosed Hashimoto's about 5 years ago

Otherwise healthy

Labs -

LOW cholesterol (total is 83) for at least 6 years

Vit D fine

Iron high

Endomysial antibody negative

Lupus, RA antibodies negative

EVERYTHING seems to be fine as far as bloodwork goes

X-Rays of hand show NOTHING, low back MRI shows mild deterioration but not worthy of my pain

Any ideas? I am tired of Doctors. I am tired of spending 20% of every lab known to man only to have them say they don't know what's wrong with me. I am now unable to work due to fatigue and pain. I am toying with trying the gluten free diet, but don't want to have to end up doing a challenge test or something down the road.

Thanks in advance

Amy

Amy,

Have you seen a rheumatologist to rule out fibromyalgia? So many of your symptoms sound SO familiar to me! I can relate to being tired of doctors!!

I too have Hashimoto's thyroiditis along with several other autoimmune diseases plus fibromyalgia.

My severe back pain, weird cramps and muscle stiffness in my feet and legs, migraines, tremors, vertigo, blurry vision and exhaustion (really too many symptoms to list) got so bad I'm now in a wheelchair. I had to get the chair just so I could keep on working! My doctors never were able to really give me a good reason for the back pain and muscle stiffness, but I hear it's typical with fibro.

I've been on the gluten free diet for less than two weeks and already many of the neurological symptoms are going away, particularly the headaches, vertigo, blurry vision and tremors. I'm also feeling more energetic. I'm definitely not back to "normal" yet, and my back pain and muscle stiffness are still with me, but I know that it can take a long time to heal completely. I just have to be patient.

I hope that you do try the gluten free diet; it may prove to be enormously helpful! There has been significant research done on the link between autoimmune thyroid disease such as Graves and Hashimoto's and celiac disease. There is such a correlation that some of the authors suggested that anyone diagnosed with Hashimoto's be immediately tested for celiac disease and put on a gluten free diet. A gluten free diet has been shown to actually reduce the number of organ-specific antibodies in the bloodstream.

Please feel free to check out some of the medical articles I have posted on the following website:

Open Original Shared Link

The papers specifically about celiac disease and autoimmune thyroiditis are berti2004, volta2001, and hadithi2007.

Take care....I hope that you find some answers soon!

JoAnn

[nasalady]

Have you seen a rheumatologist to rule out fibromyalgia? So many of your symptoms sound SO familiar to me! I can relate to being tired of doctors!!

P.S. Fibromyalgia cannot explain all of your symptoms, as it does not explain all of mine. But the combination of celiac disease or gluten sensitivity, plus other autoimmune issues such as Hashimoto's, plus fibro (which frequently accompanies autoimmune diseases), certainly might! Good luck!

[pele]

The BBC news reported in 1999 that low cholesterol levels were linked, in both men and women, to depression and anxiety. In a separate story on the same topic, MSNBC reported that, a study conducted in South Korea found that depressed patients with low cholesterol levels may be more likely to commit suicide.

The CNN web site has an article on low cholesterol that reports that people with cholesterol below 180 had twice the risk of hemorrhagic stroke over people with cholesterol levels at 230.

Shay: Thank you for this info! See my recent post under the SCD thread.

Amy: No one else has said it so I will. STOP EATING GLUTEN! You would have to be insane not to go gluten free for at least three months to see what happens. Blood testing notoriously misses a high percentage of celiac cases (70% false negative in one study) and doesn't test for non-digestive gluten intolerance, according to some doctors. Remember that there is no drug treatment for celiac or gluten intolerance so few doctors are trying very hard to diagnose it.

Many, many people on this board do not have a diagnosis based on bloodwork or endoscopy, but responded to a gluten-free diet. In my own case, after years and years of symptoms that meant nothing to a wide variety of doctors, I decided to try a gluten-free diet. I knew within 48 hours that gluten was my problem. It's been about 20 months and I am still healing. Best wishes!