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Member Since 16 Apr 2011
Offline Last Active Apr 20 2013 04:56 PM

#812776 How Old Are You?

Posted by on 22 July 2012 - 11:58 AM

Old as the hills and twice as dusty.

Somewhere between 50 and 60, I've lost track. :ph34r:
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#809939 Starving After Starting Thyroid Meds

Posted by on 10 July 2012 - 01:08 AM

I've been taking 30mg of Thyroid which is lower than what I was taking with the levo. I believe it's equivalent to 50mcg of levo? I was taking 75mcg and even then with my last blood test my TSH had started creeping up again. I know I need to take this slowly but it's not easy :( I'm so tired of having no energy and sleeping a lot. Even my husband has noticed. He said you were doing better and now it's like you're in slow motion again. I called the drs office to see if he can bump it up. I have labs in 3 weeks so it should give it time. I actually bumped up my dose myself last night. I know I know!!! But I'm sure you guys know how desperate it can get when you feel this way. I'm on 30mg and split one. So I took 45mg. If he bumps me to 60mg I'll take 45mg till I finish what I have just to ease into it. I do just take it once and at bedtime and I seem to do well that way. I'll give it time like you said. Thank you guys for responding it really helps calm me down. :)

Yes, the 30 mg of Thyroid is roughly equivalent to 50 mcg synthetic. You probably are a little underdosed.

I second what Skylark said. Your doc must stop adjusting doses by TSH. Natural thyroid very quickly lowers the TSH and a lot of doctors think you are hyper when you are NOT. They need to do your Free T3 and Free T4 in order to manage doses well.

My TSH was near zero for a very long time and I was nowhere near hyper. It's been creeping up but I've been forgetting my pills a lot (major life stress going on).

I know what you mean about the slow motion thing. I used to tell my husband I felt like I was trying to run in waist-deep mud. It's especially hard to get back into feeling so sluggish when you've had times when you've felt really good. Ugh!

Hopefully you'll be feeling more energetic soon, and hopefully the natural thyroid will work well for you. I love mine, I will NEVER EVER go back to synthetic alone. Even if I have to go out in the woods, hunt down the wild pigs and stir it up in my bathtub. :ph34r:
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#809780 Starving After Starting Thyroid Meds

Posted by on 09 July 2012 - 11:45 AM

I'm df also. It just sucks that my body seems to punish me for the smallest things :( I need to call my dr and have him increase my thyroid medication. The past 2 days I've been sleeping till 3-4 in the afternoon :( I just hope he does it without me having to go in cause I can't call in anymore for a while.

With thyroid, you need to make all your changes slowly. It is very easy to "miss the mark" if you change doses too quickly because especially with the T4 part, it takes weeks for the levels to stabilize. The general recommendation is to NOT change meds sooner than 5 or 6 weeks after a previous dose change.

As for the T3, if you have the patience and the will, the absolute BEST way to regulate the T3 part is to take the T3 separately from the T4 and dose your T3 every few hours through the day. Helps overcome the problems with the short half-life, as well as the "surge" that happens a couple of hours after taking your dose. It's a pain in the neck though ;).

Whatever you choose to do as far as the timing of your dose, just make sure it's consistent. It doesn't hurt to take it with food, but you must ALWAYS take it with food if you decide to do it that way. The testing will catch up to your habits. If you take at bedtime, you must ALWAYS take it at bedtime.

The other thing is, make sure you do NOT take your T3-containing meds on the day of testing. The T3 surge can give you a very high reading that will make you look hyperthyroid when you really are not.
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#806334 Got Results Today

Posted by on 25 June 2012 - 12:54 PM

You know... in reading these lab results, it says things like and "mild inflammatory cell infiltrate primarily composed of lymphocytes and plasma cells accompanied by eosinophils" ... that along with the 2-2.5:1, not bad but something... "prominent lymphoid aggregates" ... it sure sounds like something other than 'everything is wonderful, have a nice day.' Not drastic ... but something (in combination with the symptoms, anyway!)

Ummm...who did the interpretation of your endoscopy?

It looks to me, from different things I've found in GI journal articles (like this one, and from the Food Doc (Scott Lewey who has written for this site) that your "villous to crypt ratio" is less then good (Not necessarily dangerously bad yet, either). Normal should be 3:1, anything less shows shortening of the villi.

The presence of lymphocytes, plus shortened villi, should have been a red flag, in my opinion. Did they actually do a count of the lymphocytes? They should have.

Did they really send you on your way and say there's nothing more they can do?

I also think they should have done the anti-gliadin antibodies (deamidated gliadin peptides, IgG and IgA) along with your other tests.

The nurse was not nice to say what she said. So sorry you are going through this.
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#804995 I Attended My First Support Group Meeting.

Posted by on 20 June 2012 - 10:40 AM

What a great story! I am sorry the meeting did not turn out to be where it was supposed to, I hope you'll share the "rest of the story" at some point! And you did get to meet another celiac with life story similar to yours. Divine appointment? :)
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#800333 How To Overocome Frustration, Fear,

Posted by on 03 June 2012 - 11:31 AM

:(I have felt that My family was preferring gluten to me. I just found out that my family feels rejected too. Which is more important, my health or them? Can I treat them kindly even though I feel rejected, frustrated and misunderstood?
I hope the Lord will help me to do just that. I don't feel like I can heal without their supporting me.

How does one remember that they do not deserve anything?

I don't have an answer for your question, but I did want to stop and send a {{{{HUG}}}} your way. Finding out one has this condition and making all the required life changes is a BIG deal, and a stressor for everyone in different ways.

It sounds like you are a person of faith, so I hope you won't be offended if I respond from my faith...sometimes we are called to endure things in order to build and strengthen us; if we keep our eyes on the Author of faith and keep our trust and obedience focused there, we can get through most anything!

Hope you are feeling a little better about things today!
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#800319 Newly Diagnosed

Posted by on 03 June 2012 - 10:19 AM

Welcome to this board. I also am relatively newly diagnosed, although about 2 months ahead of you. There is much research being done concerning the fact that about 30% of Celiacs experience weight gain instead of weight loss, which you and I have both experienced. Most Dr's look for the weight loss before they even think about testing a patient for this disease...sadly that is still a prevalent note.

I do not at this time have any problems with my thyroid, however, my liver and gallbladder took the huge "hit"! There are many other symptoms I have had, but not ones that "screamed" test me for Celiac. If my Uncle had not been diagnosed, and my brother having similar symptoms, the connection to a hereditary disease probably would not have been made...and I would still be in so much agony.

My first week of being gluten free was amazing! And like so many have said, "clean the kitchen" ridding any gluten exposure! Oh, and NO processed foods and lots of liquids to flush this poison out. I lost 11 lbs that first week! I attribute that loss to the edema and inflammation build up in my body being "flushed" out of my system. Since then I have lost about one lb per week, now at 20 lbs lost...with another 20 to go to be at my goal. I am not starving either!! Before being diagnosed, I really fought weight gain and literally felt I had to starve myself to lose a pound. Now, I understand why. There is a great article on this site by a young woman who experienced the same symptom. Surprised the Dr too! It seems our immune system is so "whacked" that it can tell our body to store fat because it is fighting the gluten and will need that extra storage for the battle. Also, the inflammation in our joints and muscles is a normal reaction in that fight! I also had "frozen shoulder" which has totally abated at this point and my liver enzymes are almost completely normal!!

Give yourself time and patience. Think about how long your cells in your body have been fighting and taking a beating! I kind of thought about this diet as one being similar to a baby trying to digest in their new system. So "babied" myself...soft foods are easier to digest, use your blender to make veggie and fruit "shakes". Eat yogurt as a natural probiotic if you are not lactose intolerant, everyday. Make sure you have some type of vitamin supplement going on as well. Nature Made are gluten free. I added Vitamin B12 sublingual to my daily supplements along with Vit C, Omega 3, Multiple Vitamin without IRON because my ferritin level is somewhat high, I also added Calcium because my Uncle who was Celiac developed Osteoporosis.

I don't overdue on the excercise yet. My poor joints and muscles really took a beating! Now, I have noticed my skin is "sagging", so I really need to work on that. OH, and vitamin D...I take some sun every few days for the natural absorption and really careful not to take too much.

Wishing you well on this new journey...we have much to do!! :)

GladGirl, do you happen to have the name of that thread about fighting to lose weight, or a link to it? I'm really struggling right now! Gluten free for only 3 weeks. It used to be that if I changed my diet, I could lose 6 pounds of water weight almost instantly. This time around, the first time I've ever gone truly gluten free, I am still quite swollen, and can't seem to lose an ounce. I have not replaced my gluten with "gluten-free" products, but have gone to very little grain at all. I'm so frustrated. And so hungry!

Sorry to interrupt the thread...
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#798096 Levels Of Celiac?

Posted by on 24 May 2012 - 12:20 PM

I am a tad confused and hope someone can help explain this. Are there celiacs who don't have damage from Cross Contamination? Some of you react and others do not. My dd doesn't. I ask this because if just a tad can do damage...then why do you have to eat 4 pieces of bread a day for months for a gluten challenge? Why not just one? If one piece doesn't cause enough damage to be detected under a microscope, then why not let non-sensitive/asymptomatic celiacs eat it if it doesn't bother them? I am going stir crazy trying thinking the world is a dangerous place for my dd and if she gets a crumb, she could do damage....yet the doctors say "4 pieces of toast a day for us to test your other daughter". I am so confused. If a little can do damage, couldn't they see that without me shoving toast down dd #2?

What Adelaide said. I love the comparison to the 747 in the parking lot. :P

The damage is not always digestive/intestinal. That doesn't change the fact that in a celiac, there IS an active autoimmune response underway, the body IS attacking itself in other places. For some people, celiac is a skin disease, Dermatitis Herpetiformis. For others, celiac causes neurological damage. Many is the celiac who was very positive as far as bloodwork goes, but had negative biopsy. I don't have the research at hand and I'm in kind of a hurry, but there is much evidence supporting the idea that celiac people with other autoimmune conditions like Hashimoto's Thyroiditis, have many fewer celiac symptoms and do NOT show much intestinal damage.

Not everyone has the immediate reactions to gluten that the super sensitive manifest, but gluten still causes an inflammation reaction that stays with the body long after the gluten has gone. Inflammation is a key to many disease processes such as many cancers.

There is a guy doing lots of research on this, you might want to read some of his stuff HERE.
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#795568 Discussing The Newbie 101 Topic

Posted by on 14 May 2012 - 07:32 PM

The reason we decided to lock the original topic and start an new "discuss" one was to keep the original from being cluttered with a lot of "thank you" replies.

Thanks for your feedback.

LOL, great idea. Here is another "thank you" post.

I have met a couple of people recently who just got diagnosed with celiac, I have sent them right to the "newbie 101" topic because it is so wonderful for helping new folks get started on the diet.

A friend of my daughter's mother-in-law just got diagnosed, and told how she walked into the produce department of the market and said to herself (seriously overwhelmed!) "I guess this is all there is left for me to eat..."

Hopefully she'll join in here and feel a lot less alone!
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#791904 What Do These Results Mean?

Posted by on 29 April 2012 - 12:42 AM

A friend whose son was diagnosed and then undiagnosed w celiac. Doesn't make sense but she keeps telling me to find out if I really have a gluten issue or if its something else. I don't want to eat gluten to find out. I have a healthy respect for what happens when I eat it. My nutritionist also said bc the test was a weak positive it could have been a one time allergic reaction. I'm just confused and want to know.

Sorry to say this, but your endocrinologist and your nutritionist are equally dumb.

A weak positive celiac test does not indicate allergy. An allergy is mediated by a different set of immune globulins, IgE.

Basically, with this disease and many others, doctors don't know what to do with it in the early stages, before the catastrophic damage has occurred. Your weak positive could be at the lower end (and I'm just speculating) just because you have NOT yet sustained the heavy-duty damage. I'm not a medical professional, just sharing from the collective wealth I've been given by many who are wiser than I. Far better to take care of it early rather than after your body has been wracked by the nutritional deficiencies and pain that come later.

I wish someone had told me 12 years ago that Hashimoto's and celiac were related. I might have been able to salvage some of my natural thyroid function. I'd gladly have given up my pizza, pasta, and sourdough in order to save my thyroid.
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#787657 Every Symptom Of Celiac With A Negative Biopsy :(

Posted by on 14 April 2012 - 03:02 PM

Hi there. I have a long post I need help with.

Doc scheduled a endoscopy, and said that we'd do a bunch of other testing in the meantime. He said being gluten-free was fine, but he wanted me to do a gluten challenge for 2 weeks before the biopsy, so we could confirm celiac. 2 pieces of wheat bread a day would suffice.

During my gluten-free time, I had no migraines, no rashes, no night sweats. (Backstory: I've had migraines since I was 10.)

Things that were ruled out in the meantime: H.pylori, pancreatic issues (including cancer), lymphoma, kidney function issues, IBS, lactose intolerance, parasites.

I am wondering what specific bloodwork was done? I don't see mention of celiac blood tests.

It is possible also that you are non-celiac gluten intolerant. It is a very real syndrome which causes discomforts/symptoms like celiac, but does not cause the damage.
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#784383 If You Have Celiac Disease, Would You Keep Your Children Gluten Free For Life...

Posted by on 31 March 2012 - 11:18 AM

We've always been careful about what we bring into the home. I don't think avoiding gluten is any worse than avoiding sugars, etc.

We don't use convenience foods, we don't use soda pop, we eat very little fast food.

My kids are young adults now and don't show signs of feeling deprived. They were allowed occasional departures into "junk".

We did not live this lifestyle in a legalistic fashion, we made the children feel as if they were part of a team learning to make the best possible personal choices, and we educated them as to why we thought something was not good for us.

We explored safer alternatives together and made it an adventure to be "different". LOL, they thought their life was better than their friends' lives!
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#784370 Difference Between Tests?

Posted by on 31 March 2012 - 10:16 AM

Can someone explain the difference between the celiac panel and the celiac plus panel?


That would likely depend one what lab is doing the work. Do you know? Your doc's office should be able to tell you that if they can't tell you the components of each test. Be watchful of them, some of them do what is called a "cascade", meaning they test one pertinent component...if it is negative, they don't bother doing the tests that follow.

You can go to the websites (like Quest or Labcorp) and see how they define their tests. Every lab has their own way of doing things.
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#768761 Promethius Test Negative?

Posted by on 27 January 2012 - 02:11 PM

If someone's genetic test from Promethius came back negative, does that mean it is impossible for them to have Celiac disease?

I'm not the expert on this, but it's not necessarily impossible. I believe the Prometheus testing shows your DQ2 and DQ8, there are also people with celiac who have neither. In Europe, if I recall correctly, they use the DQ1 as a celiac marker, and there is some thinking that even DQ7 might be involved. In the USA I think the DQ1 would be used to say you have "non-celiac gluten sensitivity". That doesn't sound very ominous, but being gluten-sensitive is still no fun and impacts your health.

Have you had any blood testing to go along with your gene test?

Hopefully someone more knowledgeable will be along to give a more complete answer.
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#759375 Blood Test Negative But...

Posted by on 23 December 2011 - 12:36 PM

Here are the test results
H Pylori IGM Neg
TTG IGG....<3
TTG IGA....<3
CL-...109 High
CO2...22 Low
Protein total...7.8
alk phos...76
Anion Gap...11
Pretty much its been 3-4 weeks since ive ate gluten and im feeling better until ive been "glutened". Ive already got a note from my doctor saying im Gluten Intolerant for my work and i dont need one for my school because i take classes online! lol

I only see two celiac tests on your panel, two versions of the ttg. They should have done a serum IgA at least, anti-gliadin (which should be the deamidated version) and anti-endomysial. You should have further testing.

Although, unless you need a diagnosis for school or other purposes (as mentioned by another poster) you don't need a doctor's order to eat gluten-free. Just doing the diet will tell you a lot.
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