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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Almost Hoping I Have It...
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33 posts in this topic

Hi, my name is Jenny and this is my first post here... and it seems as though it certainly won't be my last.

I am 26 and I have never felt "right". Ever in my life. My health problems came to a head last Christmas, from a sudden vestibular problem that I am still battling. It started to dawn on me that all of my health problems might could be rolled up into one package - Celiac disease.

Tomorrow afternoon I have an appointment with a gastro doctor and I am specifically going to ask for Celiac testing. Considering everything I have gone through over the years, and the rapid deterioration of my health during the last year, it has gotten to the point where I hope I have Celiac... *THAT* I can treat.

I want to write out a quick run down of my various problems and am hoping I am not completely insane for thinking this might be Celiac. Any input would be appreciated (as well as any alternatives I should be trying), and if I do turn up positive, I'm sure I will be on these boards much more often.

History:

Psoriasis - Diagnosed at age 6, finally dormant at age 24

ADHD, inattentive type - Diagnosed at age 8, battling ever since

Unexplained trembling - All my life... 24/7. Worse when hungry, ill, or stressed

Low blood sugar - Age 14 the symptoms became apparent and progressively worse through the years. From age 23 to now it has become a serious problem

Prone to depression since age 14, put on anti depressants for this and ADHD at age 16

Generally sensitive stomach since 22

Lactose Intolerant (self diagnosed) shortly after turning 25 (mid last year).

Extreme blood sugar crashes, Vitamin D deficiency, hypothyroidism around Thanksgiving last year. Sensitivity to food increasing (not pain, but nausea, full to fast, slow digestion, diarrhea, constipation... etc).

Dec 18, 2009 - extreme migraine. Vestibular Neuritis. Nystagmus, Vertigo, hot flashes, fever, diarrhea, nausea, palpitations, numerous worthless ER and Doctor trips. Lose 20 lbs in two weeks flat. I am the walking dead.

January 2010 - Catscans; MRI - nothing

I have been horribly ill ever since then, always hungry, and either unable to eat, or unable to fill up. I look anorexic having lost so much weight. My breasts have shrunk to just below an AA and I can barely make it up a set of stairs without my heart rate elevating. Lately I have been re-diagnosed with Vestibulopathy after an ENG, which is an autonomic (peripheral) disorder. I have numerous other symptoms I have not listed, but everything seems to be stemming from these problems.

And another thing... Alzheimer's runs in my family on my father's side and I have read of a recent connection made between Alzheimer's and Celiac.

Let us hope I am not insane. If I don't have Celiac's I honestly don't know where to go from there. :( I'm so anxious!! I feel like I am slowly dieing. I'm sorry for such a long post. Thank you for reading and any thoughts you may have.

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omg YES- all of those conditions you listed could most definitely be associated with Celiac or Gluten Intolerance- FOR SURE!!! i am not diagnosing you- but i hope this is what you have- cause that would be great- not too hard to fix

it is SO enraging how these doctors can never connect the dots... why cant the doctors AT LEAST test for Celiac when you complain of classic IBS symptoms- it should just be part of their checklist!!!! annoying.. SO annoying

anyways.. make sure you're eating enough gluten before your tests- so that they're more accurate- and try to ask them for a COMPLETE Celiac panel.. also be aware that around 20% of Celiacs get False Negatives on their tests. you may be left with trying the diet on your own regardless.

good luck & keep us posted!

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cassP,

Thank you for your reply! I believe the majority of the reason no one has even glanced at my GI problems is because they are focusing on my vestibular problems. I asked my ENT if he has ever heard of or noticed a relationship between vestibulopathy (the IBS of the ear world) and Celiac/gluten allergies/any allergies. He said *maybe* Meniere's and food allergies, but not Celiac. I guess I can't thump him too hard... But my GP I want to strangle!!!! I have an appt on the 11th with an internal medicine doc as well. Gasto tomorrow.

I have been absolutely certain to practically binge on bagels, saltines, cereals, cookies, and whatnot for the past week so I am less likely to get a false negative. If I come out negative, I'm probably going to push for a biopsy anyway.

If I was on my own, I'd just go gluten free and call it a day... but I live with my fiance. I *need* a positive diagnosis in order to convince him of this lifestyle change, because it will deeply impact him too. He is already freaking out, thinking of all the things we will not be able to do. I keep telling him if this is my problem think of all the things we will finally be able to do again once I am not sick anymore... but it isn't sinking it yet. If I get a positive diagnosis, working with (ie: confronting) my family will be much easier. I bought Elisabeth Hasselbeck's book "The Gluten-Free Diet" today, and have already read 2/3 of it. It is at least calming me down.

We shall see!

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My word Jenny, we were suffering at the same time, on different sides of the world! I also started going very downhill December 2009 - also started fevers/chills, nausea, d, emergency room trip etc etc.

Going gluten-free cleared it all up, I really hope it's the same for you! Once you've done the testing, even if results are negative, definitely try the diet and see if it helps. When your family and fiance sees the results of the diet, they won't care about the test results, believe me! But it's good that you're getting tested anyway, you can't test after you've gone gluten-free, so best to do it before starting the diet.

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I *need* a positive diagnosis in order to convince him of this lifestyle change, because it will deeply impact him too. He is already freaking out, thinking of all the things we will not be able to do. I keep telling him if this is my problem think of all the things we will finally be able to do again once I am not sick anymore...

Hey hey, don't panic :) My husband still enjoys a fully gluten-ized diet, you just have to be very, very careful in your kitchen.

If he's having something with gluten, I'll prepare my gluten-free food first, put it away somewhere safe from crumbs and then prepare his food. I always make sure to wash my hands very thoroughly afterward to avoid cross contamination (CC). I have a separate pan and utensils for any gluten-containing food, and I have a marked plate that I keep for myself that never touches gluten (Also have my own knives/forks, but that's extreme). Also good to have a separate toaster for gluten/gluten free bread.

I have a section of the counter that I always use for preparing his breads - on a breadboard that's only used for his food. I have a "clean" cutting board that I use for cutting/preparing food that never touches gluten. That way I know which area of the kitchen is safe and which I can dirty with crumbs all I like.

It seems extreme, but it's worth it - I've never glutened myself with his food, and he still gets to enjoy most of his normal food. Most meals I make, I can make gluten-free, and he probably doesn't even notice the difference. If he has a special sauce he likes that I'm wary of, I'll make the food and add the sauce after I've dished up for myself.

Who does the cooking? :)

Just post what aspects of your fiance's life he thinks is going to change - I'm sure we can help suggest alternatives :) Yes he's going to have to be careful with your food, yes you will need to be more careful about eating out, and yes he's going to have to put up with you obsessing over food. But seriously, it's you giving up gluten, not him :) If you're serious enough to get married, he should be interested in putting a bit of effort into your good health....

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Hi Jenny, my first post but may as be here as anywhere. I've not be quite right most of my life either and seemed to have continuous health problems right through despite what I thought was a pretty good diet. I became vegetarian when I was in my early 20s as that's when I started to have more problems than before. To try and rid myself of any ill health but that actually seemed to compound my problems and actually started me on a course of adult acne that I still have today at age 39!. I didn't realise for nearly 20 years what was going on.

In the last 10 years I haven't been very well at all, constantly not being able to digest food, can't seem to hold a decent level of Vitamin b12 no matter how many injections I get. Despite being tired all the time can't fall asleep for 2 days, then sleep 16 hours straight, then awake for 2 days etc etc repeat. I also developed a Cystic hygroma (tumor) in my neck.

I went through a lot of ideas with my Doctor as to why my white cell count was always super high and why I couldn't keep any B12 in me, we both decided perhaps my travelling days had infested me with some kind of parasite so I took a few drugs to take care of that if that was a problem. That seemed to help a little but not really much and I still had to take B12 injections to be anywhere near functional. If I took enough B12 my bloated stomach would go down a bit but it was never "right". I did ask my Dr if he thought I could be gluten intolerant and he said "probably" but also told me I may not have it bad enough to show up on the test, so pretty much just told me to try going without it and see what happens). I was also always white as a ghost with no vitamin D simply because I was always awake at the wrong end of the day. My blood pressure and fitness and things like that have always been perfect even now at my age it's 105/65 and I've been competitive at sports even if I've turned up to tournament with 30 minutes sleep in the last 2 days (obviously I could/should have played better) but it takes me days to recover every time I play sport.

Over this time I came to realise that sometimes when I ate some kinds of white bread I got really messed up (I'd always known I couldn't handle rye bread) and it started me thinking well perhaps it's not the onion in pasta sauce that messes me up but the pasta itself so I just quit all wheat and oats and rye and anything like it about 2 months ago.

Being vegetarian my daily intake of calories right now is very low but oddly despite eating half as much I'm gaining a little weight :D? (I'm really skinny so this is good) not only that, but I can't stay into the AM hours no matter how hard I try, I just pass out like a normal person. Before I was just starting to wake up ready for another 2 days at 4am :). Also it seems a slower process but my acne is getting less and less all the time as for the Cystic Hygroma well it's not changed yet but lets give it a few months and see what happens. I may not be able to reverse that with diet but I'm sure it was caused by it.

After this revelation of the last 2 months I can easily see that my mother also has this problem since she's also always got an upset stomach and has not the best of health, in fact I think everyone is intolerant to wheat to a point, I've eaten so much bread in my life I was destined to break sooner or later.

My wifes a chef and she tells me it's very very common (large percentage) of the population that come in asking for gluten free foods (many more than vegetarians for example). I've also been lactose intolerant for ages but then again who isn't :) I don't know anyone that can drink milk 100% without some problems these days.

So that's what happened to me, I just wish I had of known this 20 years ago because it's really affected my life. I went from a top of the class student with his own separate advanced teachers to someone that lived on the verge of being homeless for the next 20 years just because I was too tired to make any money or do anything useful most of the time.

Anyway Jenny that's my story and I'll check back to see if you improve on a gluten free diet, but I'm sure will, I'm sure anyone that's eating gluten will do better without it so keep this updated :)

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Hi Jenny,

Your hubby may actually like the gluten free diet, if he is into healthy eating. One of the best ways to start is to cut out all processed foods, and instead make all your meals from scratch. Use whole ingredients and limited spices, no spice blends, no sauces or multi-ingredient foods. Like say you buy a bag of frozen peas, it should say peas and water as the ingredients, and maybe salt, but nothing else. By cutting out processed foods you eliminate food colorings, chemical preservativces, soy, and lots of cardboard boxes. And the ad-council may get mad at you but who cares?

Rice and veggies with some meat can be made a whole bunch of different ways. Mission corn tortillas are a good, cheap sub for bread. Just warm them up before eating.

It sure sounds like you have celiac or gluten intolerance. It can take a while to adapt to the diet but it is worth doing to improve your health.

Hi Foam,

Thanks for posting your story. It's a shame more doctors don't know what the heck celiac is and how to recognize it. So many of us could have had different lives if the docs were more aware.

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Hi! I can relate!!

Partly I'd be almost relieved.. and sure think my Mom and/or Grandma might have it too... :)

And partly I'd want it to be just an 'intolerance' or allergy, so that maybe it can get better with time.. (this is probably the bigger part, ha ha..)

My family mostly beliefs in 'hardcore diseases' or what comes with 'proof' so a diagnosis would be good.. On the other hand, the tests can take a long time to be made where I live, and I don't want to eat gluten all that time.. so, not sure what to do? (Okay, I posted another thread about it..)

I've been gluten-free before and it's quite an adventure!! :) Lots of fun and interesting foods discovered, like amaranth etc - which even the family likes! :)

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Thank you guys for your encouragement! I went to the GI doctor on Monday, and he has ordered blood tests for Celiac and IBD. Also had an ultrasound of my liver and gallbladder... and stool sample (that was not fun...)probably to check for colitis, parasites, and what not. He said that Celiac was a reasonable judgement call to make, but that it is "really very rare". :/ I almost wanted to correct him, but decided not to anger the fellow who could help me. It will be about 2 weeks before I get results because the blood must be shipped to CA for testing. In the mean time I'm continuing to eat lots of gluten, in case he by chance wants to to do an endoscopy.

So here is my vague plan. If the blood comes out negative and if he does not want to do the endoscopy (or even if the endoscopy comes out negative), I'm going to go gluten free after the holidays (immediately if I get a positive of course). He is reserving all judgement, but suggested he may not find anything and I may have to take a holistic approach. If I go gluten free for 3-4 months, it will kick me off of the processed foods, fast foods, and most restaurant food, so no matter what, that would be good. Unless I feel 150% on the diet, I'll try to reintroduce gluten to see what it does and adjust (or not) accordingly.

If however, if I'm negative on everything and gluten free is not helping (along with a myriad of other doctors I'm probably going to try) I'm going to consider going to the Mayo Clinic in Jacksonville, FL. I used to live there and it is the gold standard in the southeast for diagnostics.

Current good news is that I am starting to bounce back a little from my last relapse (or whatever the hell it is). Bad news is I found out on Monday I am 114 pounds (I'm 5'6" and this time last year I was 145... weight loss seems to be mostly because I'm just not eating because I'm so sick).

I've spoken more with my fiance, and he seems to be agreeing with me that a Celiac diagnosis would be good news. Hell... I'll be happy if I get any diagnosis. He's making a list of "final meals" to share with me if I get a positive on the blood. Sad and cute at the same time. Damn Louisiana and their wonderful roux sauces.

As for the cooking and everything, I'll be good. I'm already adept at making a lot of things from scratch (yogurt is my next adventure I think) so I will be good. The hard part will be restaurants (we do like to eat out a lot, so that will have to decrease) and traveling. Especially if any of my family members decide to make something gluten free just for me (!!) and screw up by flouring the pan or something. My biggest concern is the social impact this will have... but if it will make me feel better, I can deal with that.

I bought Elisabeth Hasselbeck's book on the gluten-free diet and read the whole thing on Sunday. I feel much more comfortable with my decision now and what awaits for when I go this route.

I'll keep everyone updated, since I'm not experiencing any classic pain or bloating, and have a lot of vestibular problems this might be interesting to see what comes of it. Thank you all so much for your encouragement. I hope I can get this resolved... I want my life back.

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if you're comfortable posting your blood results here- we would love to dissect them

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if you're comfortable posting your blood results here- we would love to dissect them

I'm comfortable sharing any and all. I think I'm going to ask for copies of *everything* from my GI doctor this time... We get to wait a little while though. Also toying with the idea of genetic testing if he pushes back on endoscopy (or if insurance doesn't cover it).

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yes! i ALWAYS ask for a paper copy of my results now... i actually learned what mine really meant- and then highlighted and brought it back to my Gi... he did not even notice aspects of my results.. and he didnt know that my PCP had ran a specific test that he didnt- they're just too busy or whatever and they dont really give it the attention you need. always a great idea to have them yourself so you know what's going on with your body

and im STILL learning on here- it's fascinating

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Hey Jenny,

You might have other food intolerances to consider. Yeast, soy, egg, etc. Perhaps a good old fashioned elimination diet is something you should try. Takes about a month or two to complete, but after this you *should* feel much better and have a good idea of what you can and can't tolerate. The entire goal is to take the stress off of your immune system.

Something else to consider, if this is the case, the continual stress on your immune system could have contributed to adrenal insufficiency and other hormonal issues. The low blood sugar / hypoglycemic crashes you're dealing with are just one sign of low cortisol. Trembling is also a sign of adrenal insufficiency but could also likely just be an essential tremor (somewhat common neurological condition).

Low cortisol will also lend itself to hypothyroidism as sufficient cortisol is required to get T3 (the active thyroid hormone) into the blood stream. When cortisol is too low, T3 will build up in the blood and the body will begin turning T4 into Reverse T3, rather than T3. Reverse T3 is an inactive thyroid hormone, the problem with this is, it fits into the same receptor sites as regular T3 would. So you're dealing with a double whammy.

Has your doctor tested you for thyroid antibodies? It's one thing to be hypothyroid but another to be hypothyroid due to an auto immune condition (hashimoto's). If you have hashi's, this could also explain why you have occasional palpitations. This is because those of us with this auto immune condition have ups and downs. This means that one week your thyroid medication might be sufficient, and the next week it may be too much (because the auto immune response might have eased up), then the next week it might not be enough (because it started up again). Gluten tends to be an aggravating factor in those of us with auto immune conditions, so even if you're not diagnosed with celiac, it may be wise to avoid it all together.

What thyroid medication are you taking for your hypothyroid?

Have you ever tested your adrenals (saliva test)?

How is your sleep? Do you tend to wake up constantly at night and feel unrested in the morning?

Do you tend to get migraines about 10 days before your cycle or is this something that happens almost every day? The reason I ask is because the migraines could be related to a hormone imbalance. This could have also been caused by continual stress on the immune system.

Any lab work you can share would give us a better idea of what your problem could be.

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Jasondub,

Honestly it is like you are reading my mind. Over the past week I've pretty much convinced myself I need to go on an elimination diet because I'm also concerned about yeast, casein, fructose, and nightshades. However, I do not want to do it without a doctor's guidance and blessing.

As of right now I have no results to show. I had blood drawn for Celiac and IBD, as well as a stool sample taken, and an ultrasound of my liver and gallbladder per gastro doc's orders (though he does not sound optimistic that he will find anything). I'm supposed to call him this Wed and schedule an appt to go over everything. Also, this wed I have my first appt with an internal medicine doctor. I want him/her to check out vitamin deficiencies (B's, D, K, folic acid, calcium, etc) and also was going to press for them to somehow test my hormone levels. I never considered the adrenal glands... and I have not thought about revisiting the thyroid issue as well.

Regarding my thyroid, I went hypo late last year, went on levothyroxine (125mg???) for a two weeks and then my entire system crashed with the thing that happened in December. One doctor thought I was reacting to the meds and shot me off to the ER... but they said my thyroid was fine. I quit the meds entirely because I'm not trusting them. Fast forward 2 months, I have my thyroid retested (not on meds still) and they say it is fine. I had it tested again in September (no meds for 9 months) and they said it was fine again.

As for sleep, I have had insomnia for a few years. Never was a good sleeper to start with and the Welbutrin (anti-depressant) does not help. It got so bad about 2 years ago I was rotating between nyquil, benadryl, alcohol, ibuprofen to get to sleep. I am now on Ambien and take 5-10mg every night. Also have a box fan on full blast 2 feet from my head every night so sounds don't bother me (cats, neighbors, snoring fiance).

Migraines are new for me. I've had very very few this year (maybe just 1 official one) because I am being exceedingly careful. I had only had a handful last year. The one in December taking the cake. However, though obviously painful, they are not near as bad as some people get... or as bad as I would expect them to be. And no... nothing seems to be aligning with my womanly cycle. Though I am on the pill... so that could be suppressing hormonal problems. Both my mother and sister had ovarian cysts, and I've been on the pill since I was 14 and have had no problems. My last period was very odd though. Exceeding dark and... sticky. I figured it was because of my newest bought of weightloss.

Speaking of weightloss... on Monday I weighed in at 114. This time last year I was 145. I look gross. Weight loss is mostly from me just not eating enough.

So far my list for the internal medicine doctor is:

vitamin deficiencies

hormones

thyroid antibodies

food intolerance tests

Elimination diet

We shall see. I'll keep everyone posted on the results.

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When cortisol is too low, T3 will build up in the blood and the body will begin turning T4 into Reverse T3, rather than T3. Reverse T3 is an inactive thyroid hormone, the problem with this is, it fits into the same receptor sites as regular T3 would. So you're dealing with a double whammy.

jason- can they tell when they test your blood if your T3 is active & normal or if it's "reverse"/inactive T3?????

please explain this to me like im a 2 yr old... i would like to understand this and be able to have better communication with my doc in december.

im so confused- because im on synthroid now.. tested as Hypo. but i was confused as to why my T3, uptake, and T4 were all very normal numbers- while my TSH was 11.39. could some of my T3 be inactive???

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jason- can they tell when they test your blood if your T3 is active & normal or if it's "reverse"/inactive T3?????

please explain this to me like im a 2 yr old... i would like to understand this and be able to have better communication with my doc in december.

im so confused- because im on synthroid now.. tested as Hypo. but i was confused as to why my T3, uptake, and T4 were all very normal numbers- while my TSH was 11.39. could some of my T3 be inactive???

Hey cass,

Yes, there is actually a test for Reverse T3 (RT3) that your doctor can order. One thing to keep in mind, a lot of doctors treat hypothyroid patients by numbers on a lab versus actual symptoms. They'll look at your TSH level for example and say, "oh, it's within range, you're just fine" even though you feel like crap. Some doctors don't even check RT3 yet they prescribe their patients Synthroid (T4) only medication - this can make things even worse. This medication is not right for most hypothyroid patients and many doctors still insist it is the gold standard. You do not want to be on this medication alone.

I'll try to explain a few of the important markers for thyroid state and give you some examples of questionable practices that are followed by MANY doctors.

Some quick background:

  • T4: This is a pro-hormone produced by your thyroid. A healthy body will convert this to T3 and any excess to inactive Reverse T3. This is around 80% of what your thyroid produces. The rest being active T3 and small amounts of T2 and T1.
  • T3: This is the active thyroid hormone that can actually be used by your body. This is the golden hormone.

Valuable thyroid tests:



  • TSH - Thyroid Stimulating Hormone This is a signaling hormone from your pituitary gland that tells your thyroid to produce hormones. Think of it as a thermostat for your metabolism. The higher the number, the more your thyroid is being told to produce. Many doctors use this marker alone to determine the state of your thyroid (which is wrong).
  • Total T3 This is the amount of total T3 in the blood. This could be active and inactive (already bound to something) T3.
  • Free T3 This is the amount of "free" T3 in the blood. This T3 is not bound to anything and is available for cell metabolism.
  • Total T4 Similar to total T3, this is the amount of total T4 in the blood.
  • Free T4 This is the amount of "free" T4 in the blood. This is T4 not bound to anything and is available for conversion to active / inactive thyroid hormone.
  • Reverse T3 This is a mirror image of T3. It is inactive but it fits in the T3 cell receptor, blocking T3 from entering.

    Thyroid Antibodies
  • TPOab (thyroid peroxidase)
  • TgAb (antithyroglobulin)

    If you have any thyroid anti bodies, then you likely have an auto-immune condition called "Hashimoto's Thyroiditis." When your thyroid is working, your immune system will begin attacking it, wearing it down. This is how many of us develop a hypothyroid condition. These anti-bodies will also bind to active thyroid hormones and prevent them from being able to be metabolized. Think of them like a boot on your car.

----

If you're on Synthroid (T4) now. There is a chance that a lot of the conversion from T4 is moving into RT3. The problem with this is it will create a vicious cycle because actual T3 will build up since RT3 is blocking it at the receptor site. This makes your body turn the supplemental T4 into RT3 in an attempt to prevent too much T3 from building up in the blood.

There is another component to all of this, the stress hormone Cortisol. Cortisol is a necessary component for the metabolism of T3 by the cells. If your cortisol is low, then you might not be able to metabolize T3 efficiently even though Free T3 levels are high enough. In this case, people use something like hydrocortisone to support the process. You can check your cortisol levels by doing a simple saliva test that you can order online. It is best to address any adrenal issue before treating the thyroid. It is important that you rule out any adrenal insufficiencies.

An excellent way at determining the current state of your metabolism is to take your temperature 2-3 times a day for a few days. If the average is constantly lower than 98.3-98.6 then it is likely that even though you're taking thyroid meds, you aren't getting the metabolic reactions you need to feel better - leaving you with hypothyroid symptoms. Before starting thyroid meds, my temperature was a steady 97.6F. I felt horrible. Like a zombie.

Any thyroid medication you begin taking will suppress your natural thyroid production, this will lower TSH levels. When some doctors see TSH low or within range, they think you're good to go because your body isn't signaling for more thyroid hormone. This leaves many people in the dirt due to unaccounted for roadblocks as stated above (antibodies, high reverse t3).

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Consider asking your doctor on changing you from T4 only meds to something like dessicated thyroid (Armour) which contains both T4 and T3 at a natural ratio (like our thyroid glands produce). Even the addition of synthetic T3 to your T4 would be better than just T4 alone.

An *excellent* book if you suffer from hypothyroidism / fatigue is Stop The Thyroid Madness (Google it). This book will shed so much light on this subject and it is a very easy read. If you're suffering from hypothyroid symptoms it could easily change your life.

As you can see, this can all be a little overwhelming. But, once it "clicks" you'll be able to take control of your life once again. Hope this all helps! Let me know if you have any other questions.

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God Bless u Jason!!!!!! im going to print this out & get the book...

this will help me a lot... plus my mom is hashimotos and she's been on synthroid 75mcg for years... she's never felt any better from it... her pcp (same as mine).. AND her doc at MAYO dont seem concerned <_<

thankyou so so so much... this is SO HELPFUL!!! :)

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God Bless u Jason!!!!!! im going to print this out & get the book...

this will help me a lot... plus my mom is hashimotos and she's been on synthroid 75mcg for years... she's never felt any better from it... her pcp (same as mine).. AND her doc at MAYO dont seem concerned <_<

thankyou so so so much... this is SO HELPFUL!!! :)

No problem! The hardest part is finding a doctor that actually knows what they're doing. Thyroid medication is relatively cheap. Dessicated thyroid like Armour, Westhroid, etc is somewhere around 35 cents a pill. This is because big pharma can't patent it. This is also another reason why many doctors were pushing T4 many years ago even though dessicated thyroid was being used successfully for around 50 years prior. It's all about $. Sadly, now that patents have expired, the school of thought / training hasn't really changed.

A good bet would be to call a compounding pharmacy close to you and ask them for a list of doctors in your area that prescribe dessicated / compounded thyroid to their patients. This way you know you're going to a doctor in the know :)

Some people even go as far as self medicating, ordering meds online from overseas.

In any case, keep me posted on any progress you've made. I'd like to know if all of this helps :)

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Dear Jenny,

I sincerely wish you the best of luck getting diagnosed, and on the road to treatment. I just found this blog today, and this is my first post. Your symptoms describe mine to a tee, when I was your age. My doctors over the years have just about ignored me. My last GI specialist could do nothing but request CT scans with awful contrast dye (that I have, unfortunately, developed a horrible allergy to).

My trembling occurs when I am hungry. I get more than dizzy, and have fallen over a few times. I sweat more than usual when this occurs as well. It comes and goes.

I hear you about never having "felt right", or well. My digestive tract disorders have gotten progressively worse over the past 10 years. I'm now 50, and its gotten to the point where I can not stand the pain. I get terrible burning pain in my upper intestines, gas pain, and stomach pain, GI bloating, alternating diarrhea and constipation. I feel weak most of the time, can't sleep due to the digestive tract pain. My lactose intolerance has gotten much worse over the past 15 years. Depression, low blood sugar (and its related symptoms), as well as vitamin deficiencies, I have these as well.

Not one of the many GI specialists Ive seen ever even spoke to me about possible gluten allergies or the possibility of coeliac disease.

After reading about your symptoms, and several others on these posts, I dug out the last GI doctors phone number and will call tomorrow to ask about gluten/Coeliac related disorder testing.

Please let us know how your tests go, and best luck finding out what's wrong and lets get healthy!

Regards,

Mike

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Hey everyone! Just an update on my continuing waiting game... still waiting on Celiac & IBD blood tests. As well as ultrasound on the liver/gallbladder. Should be talking to that doctor in about a week or two.

A *new* development... I had my first internal medicine dr appt today, and she is currently leaning towards some sort of hypoadrenal disorder (like Addision's Disease) and has ordered the following blood tests:

Cosyntropine stimulation test (adrenal gland test)

Serum ACTH level (adrenal)

CBC (complete bloodcount)

CMP (overall health test of some kind)

TSH/FT4 (thyroid)

ESR (inflammation)

C-RP (inflammation/liver)

ANA (autoimmune)

She is of course interested in whatever comes of my tests with GI doc. I pressed going on an elimination diet and she said she wanted to wait and see what all these results came out to be. I go for testing this Friday, and follow up with her on the 24th.

No matter what comes of all of this, I think I want to go on an elimination diet anyway. Food has hated me for so long I now hate it back... I'm scared to eat anything. Had some chicken and rice earlier and it sat in my stomach like a sack of rocks. Oh, and this weekend I ate a big baked potato and wanted to vomit for 3 hours. I'm thinking that even if I do not have any food intolerances at all... at least an elimination diet would help ease my fear of eating.

110.8lbs and counting... down 3 pounds from last week. I nearly have the anorexic runway model look down. :/

~~~~~~~~~

And Mike,

Thank you for sharing and I hope you can figure everything out soon! Just keep in mind, even if you test negative on everything you could still have some sort of food intolerance... so consider a special diet no matter what anyone says. Might want to schedule an appt with a dietitian or internal medicine as well. Good luck at getting better!

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jenny- keep in mind that eliminating gluten may still be one of your major answers.

even if you came back positive for Addison's or Hypoadrenals or adrenal fatigue- you could still have Celiac or Nonceliac Gluten Intolerance on top of that..

many of these conditions go together or cause eachother.

ie: i have Celiac.. and just tested as Hypothyroid.. next i want them to check if it's Hashimoto's and ALSO to check my adrenals. all these conditions can be caused by GLUTEN

an elevated ANA can mean ANY autoimmune disease- whether it's celiac or Addison's or both

good luck with all your results and hope u feel better & get answers :)

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Okay, got some results. Celiac blood panels are negative. IBD panel is negative. Ultrasound is normal.

Follow up with GI doc on 12/13/10

Here are the numbers... reference range in (xxx)

Celiac Serology:

Anti-Gliadin IgG ELISA (AGA IgG) -- 6.9 U/ml ( < 16.3 U/ml)

Anti-Gliadin IgA ELISA (AGA IgA) -- 1.1 U/ml ( < 9.3 U/ml)

Anti-Human Tissue Transflutaminase IgA ELISA (TTG IgA) -- 0.4 U/ml ( < 10.3 U/ml)

Anti-Endomysial IgA IFA (EMA IgA) -- Negative (Negative)

Total Serum IgA by Nephelometry (TOTAL IgA) -- 63 mg/dl ( >13 years to adult: 44-441 mg/dl)

IBD Serology:

ASCA IgA ELISA -- 14.3 EU/ml ( < 20.5 EU/ml)

ASCA IgG ELISA -- < 12.0 EU/ml ( < 22.2 EU/ml)

AntyOmpC IgA ELISA -- 7.1 EU/ml ( < 28.8 EU/ml)

Anti-CBir1 ELISA -- 25 EU/ml ( < 34.9 EU/ml)

IBD Specific pANCA...

AutoAntibody ELISA -- < 12.1 EU/ml ( < 18.7 EU/ml)

IFA Perinuclear Pattern -- Not detected (not detected)

DNAse Sensitivity -- Not detected (not detected)

Also picked up some labs from my GP regarding my thyroid:

12/04/09 TSH -- 7.020 (0.450-4.500 ulU/mL)

Started levothyroxin 125 micrograms daily

12/18/10 -- Woke up with dizzyness, hot flashes, diarrhea, fever, nausea, nystagmus etc, etc (migraine the night before). I cut back a little on the levothyroxin thinking it might be the cause

12/24/2009 TSH -- 4.800 (0.450-4.500ulU/mL)

Still ill. Stop taking levothyroxin. Got to Endo doc in February, says TSH is normal. Take no levo at all..

8/26/2010 TSH -- 3.34 (0.25-5 IU/ml) On *NO* meds

Vitamin D 8/26/10 -- 34.0 (32.0-100.0ng/mL)

Awaiting testing on adrenal system, various others, and another TSH. Follow up with Internest 11/24/10

So, let me know what you think of all this... also is 125 micrograms of levothyroxin a normal starting dose?

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OMG, now i am very new to all this thyroid stuff- i just got dx with Hypo (TSH 11.39)... but i am PRETTY SURE that 125mcg is way too high for a STARTING DOSE... no wonder u felt sick and dizzy.

but i am confused at how your TSH dropped to 3. something with no meds??? idk.. im still learning about it.

and all your gluten antibody tests are so negative- were you gluten free before your test??

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Okay... more test results in. The new stuff is down below and everything is on my profile page. They tested my adrenals and thyroids. Everything came out negative of course. There was some errors made by the lab, so I'm getting it redone on 12/13/10 as well as a more thorough screening of my thyroid (TSH is 4.44 per latest test).

The only blip on the radar with these tests were in the Automated Differential blood test. My neutrophils was a bit low and my lymphocytes was a bit high. This suggests infection of some kind, and perhaps dietary deficiency or Addison's. The internest didn't even mention it or point it out... so obviously it is no cause for concern to her.

ANA is borderline...

Her diagnosis was vestibular neuritis that I just can't seem to kick. So, then I broke down into tears telling her that it isn't matching many of my symptoms, and if all my tests results are normal/negative... how can I feel like such **** all the time?? Of course all the blood tests were done when I felt pretty good. So there is that...

Tomorrow I'm testing my B12 and I'm beginning an elimination diet for Gluten, Casein, Soy, and Nightshades.

If I'm not significantly better by end of February from this... the interest is talking about sending me off to Mayo Clinic. Oh joy.

~~~~~~~~~~~~~~~~~~~~~~~~

Lab results

~~~~~~~~~~~~~~~~~~~~~~~~

11/15/10 Adrenal Testing NEGATIVE

ACTH Stimulation Test

Cortisol Base ACTH -- 20.2 ug/dL (4.0-22.00) time: 8:34

Cortisol 60 Min Post ACTH -- 30.8 ug/dL (no ref range given) time: 10:22

Errors by lab made... redoing test on 12/13/10

I also don't think the doctor gave me all the pages

11/15/10 Analyzer/or Components NEGATIVE

ANA Screen -- 0.94 Units (0.00-0.99)

1.0 and greater is positive

Screens for autoimmune

11/15/10 CBC (Complete Blood Count) NORMAL

WBC -- 4.2 1000/ul (4.0-11.0)

RBC -- 4.67 mill/uL (3.8-5.3)

Hgb -- 13.4 gm/dl (12.0-16.0)

Hct -- 39.5 % (37.0-47.0)

MCV -- 85 fl (80-100)

MCHC -- 34 gm/dl (31.0-37.0)

RDW -- 14 % (12.1-14.9)

Plts -- 230 1000/ul (150-375)

MPV -- 8.7 fl (6.5-12.0)

11/15/10 Automated Diff

Neut% -- 36 (44-81) LOW

Lym% -- 49 (21-47) HIGH

Mono% -- 10 (2-11)

Eosin% -- 3 (0-7)

Baso % -- 2 (0-2)

Neut A -- 1.5 1000/ul (1.5-10)

Lym A -- 2.1 1000/ul (1.3-2.9)

Mon A -- 0.4 1000/ul (0.1-1.0)

Eos A -- 0.1 1000/ul (0.0-0.7)

Basos A -- 0.1 1000/ul (0.0-0.2)

11/15/10 Chemistry Panel NORMAL

Na -- 139 mEq/L (136-145)

K -- 4.1 mEq/L (3.5-5.1)

Cl -- 109 mEq/L (100-109)

CO2 -- 26 mmol/L (22-33)

Gluc -- 87 mg/dL (70-100)

BUN Level -- 17 mg/dL (5-25)

Creatinine Level -- .85 mg/dL (.57-1.25)

Calcm -- 9.8 mg/dL (8.8-10.6)

TotPrt -- 6.8 gm/dl (6.0-8.3)

Alb -- 4.0 gm/dL (0.2-1.2)

Bili T -- 0.5 mg/dL (0.2-1.2)

AlkP -- 47 unit/L (40-150)

AST (SGOT) -- 15 unit/L (10-58)

ALT (SGPT) -- 24 unit/L (5-50)

11/15/10 Immunology/Serology NORMAL

C Reactive Protein -- 1.5 mg/L (0.0-5.0)

11/15/10 Other Cellular Testing NORMAL

Sed Rate -- 5 mm/hr (0-15)

11/15/10 Thyroid Group NORMAL

TSH -- 4.441 mIU/L (0.350-4.940)

Thyroxine Free -- 1.28 ng/dl (0.70-1.48)

HIV Test - Negative

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Also, I've read a clinical guide to thyroid disease, "Stop the Thyroid Madness", and two gluten books... all of this is making me want to scream at doctors...

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    • Hello Anonymous, and if nobody has said as much yet, welcome Don't worry (difficult to do when it can cause anxiety :P) it's very early days and you have a lot of healing to come.  If you've not already seen it there's advice and further info here:    It gets easier over time as checking becomes routine, you know your 'safe' products and your eating pattern changes. You'll get there  Maybe start a thread of your own if you'd like some input from others? Finally, back on topic. My Aunt has narcolepsy and although she's fiercely resistant to giving up gluten she has now made a connnection to eating bread and it's onset. As often, not conclusive but suggestive...
    • Hello again   Well first thing is the - Usual disclaimers apply... and this is something you have to follow up with your doctors as you know. But it's helpful sometimes to get another perspective so here's this layman see's from outside.  What I have seen from the various results posted here is that people's numbers vary wildly and, just as important, the numbers often don't bear any direct relationship to the level of intestinal damage revealed via endoscopy. Ultimately although you're not scoring much above positive, you are scoring a positive  and there are a couple of other risk factors you've mentioned that are suggestive if not conclusive - you have another autoimmune which raises the odds of having another one for example.  You've had two tests that are positive. The purpose of taking the second test was either to invalidate or confirm the first. I'd suggest it's achieved the latter, at least inasmuch as a GI may want to check you via endoscopy. That's still the 'gold standard' of celiac diagnosis and would give you an idea if there's any intestinal damage. I suspect with 2 positive tests and the history above that's what they'll suggest.  If your doctor or GI doesn't want to proceed with that you have a decision to make. Push for a second opinion or new doctor or if you're done with testing give the gluten free diet a proper try. Make a journal and see if some of those subtle things you reference may actually be symptoms. Fwiw, there are a lot of people here whose thyroid issues improved dramatically once they were gluten free, so whether celiac or gluten sensitive you should certainly give the diet a try. Only however once the testing is completed and remember: 
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The only thing I got out of the acid blockers were the side effects, so it was back to square 1. The g.e. said that the next test he could do was an upper endoscopy with biopsies. (hint: the celiac test!) Wanting to find a solution to my problems, the endoscopy was scheduled. Pretty painless, I was in and out in a day, but the results took much much longer. Biopsies, or the little pieces of my esophagus, stomach, and small intestine, were sent to the lab, and they came back clean. I didn't really go back to the g.e. for a whole year after that because life became busy, I wasn't prompted to follow up, and I just dismissed the swallowing problems the best I could and went on my way. Now, I've never been huge on the gluten, big bread-y sandwiches or croissants or pies were never foods that I super "enjoyed". I wouldn't feel bad after eating them, I just didn't like the taste of bread so much, but I loved cookies, cake and a lot of other things that do have gluten in them. I lead a lowish gluten life but I wasn't really monitoring it that way. Everything changed when I got really nasty (systemic) poison ivy. My eyes were swollen shut, and the rash was everywhere. I almost went to the hospital, but cooped out at the family doctor's place and got a script for prednisone (a steroid). But, I found that after I had tapered off the steroids, I had magically become lactose intolerant. So back to the family doctor again probably because I broke my toe or something, but we also got to talk about this magical lactose intolerance business (because I love anything dairy and it was indeed devastating). He was surprised as there is literally no correlation between steroids and becoming lactose intolerant. He asked me if I still had the swallowing problems, which I did, and so it was back to the g.e. for round 3. because my family doctor "does not believe in coincidences". Meeting with the G.E., he mainly addressed the swallowing problems telling me that he had done what he could to diagnose with the technology that we had at the highly specialized hospital that we were at, and I would have to travel about 3 hours away to see a different doctor who would do some tests involving the muscles in the esophagus. But right before I was about to leave, we started talking about lactose intolerance. He brought up other foods that I was avoiding (if any), and then the conversation went to gluten. I mentioned that I had an aunt that was gluten-sensitive. He advised that I do the blood test that can show an indication of celiac whenever in the future. I decided to do it that day. At this point in time, I was not eating much gluten because of the fact that it was personal preference. The normal range for values in this test is from 0 to 20. A few weeks later, I learned that I scored a 35. A second upper endoscopy with biopsies was scheduled, but this time I was told to eat a moderate amount of gluten everyday before the procedure. I ate about two slices of bread per day, which is more than I normally would. I was normal for the first two-three weeks of the gluten plus diet, but then I became really sick. I started getting the normal celiac symptoms, like diarrhea and extreme tiredness. Near the end, I had debilitating stomach pain and I was 2 times more asleep than awake each day. I couldn't do the 2 pieces of bread a day some days, but the pain was still there. I knew that I wouldn't ever have to force myself to eat bread for a test ever again. I was called a few days before my endoscopy telling me that a kid in a worse state than me had to take the OR during my time. I forced myself to eat more bread for another month and a half. The day finally came. I was diagnosed celiac, which I have concluded to be initiated by (1) the steroids/poison ivy and (2) the gluten binge fest.  AAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAA Celiac Disease isn't completely understood yet. Most of the time if you weren't showing symptoms when you were a baby (so your case) it means that celiac was/could be triggered by an event in your life that causes stress on the body (like stress, physical injury, etc.).  The positive result that you got from the blood test doesn't automatically mean celiac, but it could. Here's some options: Talk to your doctor (or a different doctor) or even a specialist gastroenterologist (you can get a referral from a family doctor (general physician)) and see if you can do the blood test again, you have to have some kind of gluten for this to work in advance, so if you don't want to break your gluten-free streak, than don't really invest in this option. If you feel comfortable, you could even ask to do this test under a few scenarios (no gluten (now) and after a gluten binge, compare results). If you do this test and your indication is low off gluten and then high after gluten, I'd probably skip the biopsy. That's a strong enough sign that you don't need to put yourself through the painful-gluten binge. Maybe this is what that first doctor just assumed. But having that test when you haven't had any gluten could make the difference - it acts as a control. Go straight to the biopsy. You could do this, but I'd probably do the blood test first. I went through a lot of stress with the gluten-binge that you have to do to get an accurate result, you would also be breaking your gluten-free diet that may/may not be helping you right now. Do nothing, stay on your gluten free diet hoping that it is helping you. But if you are not celiac or gluten-sensitive (celiac before it starts to wreck your small intestine), going gluten free isn't healthy - you can do some research on this if it interests you. If you feel bad/unhealthy after going gluten free it's probably a sign. Good luck, also know that you might come to a point of stress in your life that can start celiac's destructive path. Ultimately, it is your body, and you should not feel forced or hesitate to act on health issues that impact you.
    • I'm sorry that life is so hard right now. Really.  I can't imagine working 3 jobs and trying to manage this terrible illness.  I think about American society and their obsession with food often.  Whenever you look at the internet, there are all these fabulous gluten-free recipes, but when you don't have time or money to cook these things, a simple gluten-free lifestyle is just that - simple. There isn't a lot of variety, so it's kind of boring. But, I guess I have gotten used to being boring. I just eat corn chex and fruit or yogurt for breakfast. I eat a lot of eggs, beans, rice, corn tortillas, nuts, chicken, fruit and veggies.  A loaf of gluten-free bread will last me 4-6 months in the freezer.  I buy a bag of dried beans for $1.29, I soak them overnight, and put them in the crockpot the next day. I add different spices, sometimes chicken and Voila! - dinner is ready when I get home from a long day. Family gatherings are miserable and I haven't quite figured out the best way to deal yet. If my grandmother were still alive, I imagine she would be a lot like yours - well-meaning but not really able to understand the nitty-gritty.   I just reassure my family that I am fine and that they really shouldn't do anything special for me. I bring a bag of Hershey's kisses or other gluten-free candy I can nibble on along with my meal and then I try to treat myself to a nicer home cooked meal later in the week when I have time to cook - because who has time to cook during Christmas???? And, I agree with knitty knitty. If someone else in your family/friends were gluten-free for medical reasons, it would make socializing a bit easier. One of my husband's good friends is NCGS. When we get together as a group, we can make each other special dishes and it helps to feel less isolated.  Good luck!  
    • Hi!  Um, please forgive my quirky sense of humor..... Celiac Disease is genetic... All first degree relatives of people diagnosed with Celiac Disease should be tested for the disease, too.  Gall bladder problems are often associated with Celiac Disease.  Your diagnosis might save your whole family from further medical problems as they age and the disease progresses... You need to set a good example if relatives are similarly diagnosed.... and then everybody will have to eat gluten free at family gatherings....  
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