Uninsured celiac disease-er

[SocietyInDenial]

I am a new poster, so here is a little bit of my story...

Three years ago I was a full-time student who was constantly sick from Celiac Disease, but still in the dark. To manage my stress better, and not mar my academic career with bad grades, I decided to go to school part-time while rehabing my body and researching what was wrong with me. In doing so I forfitted my insurance benfits, which, at the time, I didn't realize how vital they were going to be. Before my insurance ran out I had a blood test for celiac disease and it said that I wasn't positive (we know what that means!), but I have a B12 and an Iron Deficiency. My doctor administered a once-a-week B12 injection that she said was "enough to sustain a horse". After five weeks, she tested my blood once again, and my levels hadn't changed at all. She said that the reason could be from celiac disease and malabsorption.

Soooo... I have been doing this gluten-free thing without medical supervision for two and a half years. Everything sans-gluten was going great until recently. I have been having problems with unexplained weight gain, swelling of hand and feet, frequent and somewhat drastic mood swings, a lack-luster libido, inconsistency with bowel movement (even though I am completely gluten-free), dizziness while eating, muscle pain, and exhaustion. I researched my symptoms in conjunction with celiac disease, and it looks like I may have hypothyroidism.

I know it is tempting to tell me to get health insurance as soon as possible, but I cannot go to school full-time because I can't handle the physical and mental stress of work, school, and celiac disease... and if I do go back full-time then my grades and pocket with suffer tremendously, and that cannot happen either. It is really a bad and over-dramatic situation. So, my questions are.... what can I do to find out if I have a thyroid disorder? Do my pre-existing conditions have a link with hypothyroidism? And, most importantly, how do I treat it without insurance?

Also, I have done some research about things that would speed up my thyroid, as a result I have increased the amount of Celtic sea salt and coconut oil in my diet, and I was condsidering taking natural iodine/sea kelp supplements and charting my temperature changes. Any thoughts on that?

I would love some seasoned advice, because I am 22 years old and and in more pain than my friends that are triple my age!

Monica.

[Ursa Major]

Hi Monica, and welcome to these boards. I am sorry you are so unwell, I sure know how you feel, as you sound just like me most of my life. Except that you figured out the gluten problem about 30 years sooner.

I am struggling with a low functioning thyroid as well. Do you have consistently low body temperatures? Start charting your temperatures now. Take it three times a day, three, six and nine hours after getting up.

If your temperatures are below normal all the time, but stable, it is the thyroid. If your temperatures keep going up and down from day to day as well as being low (one day up, the next down, the next up again), then you have adrenal fatigue as well, and need to treat both the adrenal glands and the thyroid.

I believe that in the US, you can buy both desiccated thyroid and desiccated adrenal in the health food store (the Armour brand of desiccated thyroid needs to be prescribed by a doctor).

Supplementing with Celtic sea salt and kelp is an excellent idea, and could be very helpful. Be careful with the desiccated thyroid and adrenal. Start with one pill a day for two weeks (all the while keeping track of your temperatures). If you still don't feel well, go to two, etc. Once you feel well and your temperatures are normal, stay at that dose.

Also, you might want to get tested for Lyme disease, your symptoms fit that as well.

And make sure you keep up the gluten-free diet, of course.

I hope you feel better soon.

[tarnalberry]

Checking temps sounds like a good idea, because what first struck me was hormonal but I haven't done the research on these symptoms you have, so take that with a grain of salt. :/ There are clinics in most major areas that operate on a sliding scale and will charge you based on your ability to pay (you'll need to document income - and the requirements aren't stringent) for that.

[CarlaB]

Also, you might want to get tested for Lyme disease, your symptoms fit that as well.

I'm glad you brought this up. It is highly suspect especially because you live in an endemic area. I have to go to NY for treatment because there are no doctors who treat it in my "non-endemic" area (even though I got it here).

For more information on the temperature method of testing thyroid, google Dr. Broda Barnes.

Even with a low basal temp., you may want to be tested for Lyme ... Lyme Disease lowers the body temperature ... I took thyroid for years and it helped somewhat, but it was a bandaide in my case.

PM me if you want more info, I don't want to bring this too far off the topic of the board. Here are three websites I recommend -- Open Original Shared Link, Open Original Shared Link, and Open Original Shared Link.

I also tested negative for celiac, but do MUCH better on the gluten-free diet! I clearly have a problem with gluten.

[CarlaB]

I've been thinking about the B12 deficiency you mentioned. It's very puzzling that the injections didn't help because they don't go through the GI tract, so shouldn't be affected by the celiac.

I just want to encourage you to keep researching on your own (with help from us ). I discovered my problem from my own research. I never would have found it relying on the medical system.

I'll look for what I can find regarding B12 and your symptoms.

Edit:

I found this at Open Original Shared Link

Experience has shown that collateral conditions exist in those who have been ill a long time. Test B12 levels, and be prepared to aggressively treat with parenteral formulations of the B-vitamins: 100mg each of B1 and B6 and 1000 mcg of B12 IM at least weekly in the more ill patient.

Apparently, B12 levels can be a problem in chronic Lyme. That could explain why they didn't get better when you were given injections.

And this from the same website:

Activation of the inflammatory cascade has been implicated in blockade of cellular receptors. One example of this is insulin resistance, which may partly account for the dyslipidemia and weight gain that is noted in 80% of chronic Lyme patients. Clinical hypothyroidism can result from receptor blockade and thus hypothyroidism can exist despite normal serum hormone levels. Also, because the Lyme syndrome has been associated with faulty activation of T4, measure free T3 levels by RIA, and basal A.M. body temperatures. If hypothyroidism is found, you will need to treat with T3 preparations.

[NoGluGirl]

I am a new poster, so here is a little bit of my story...

Three years ago I was a full-time student who was constantly sick from Celiac Disease, but still in the dark. To manage my stress better, and not mar my academic career with bad grades, I decided to go to school part-time while rehabing my body and researching what was wrong with me. In doing so I forfitted my insurance benfits, which, at the time, I didn't realize how vital they were going to be. Before my insurance ran out I had a blood test for celiac disease and it said that I wasn't positive (we know what that means!), but I have a B12 and an Iron Deficiency. My doctor administered a once-a-week B12 injection that she said was "enough to sustain a horse". After five weeks, she tested my blood once again, and my levels hadn't changed at all. She said that the reason could be from celiac disease and malabsorption.

Soooo... I have been doing this gluten-free thing without medical supervision for two and a half years. Everything sans-gluten was going great until recently. I have been having problems with unexplained weight gain, swelling of hand and feet, frequent and somewhat drastic mood swings, a lack-luster libido, inconsistency with bowel movement (even though I am completely gluten-free), dizziness while eating, muscle pain, and exhaustion. I researched my symptoms in conjunction with celiac disease, and it looks like I may have hypothyroidism.

I know it is tempting to tell me to get health insurance as soon as possible, but I cannot go to school full-time because I can't handle the physical and mental stress of work, school, and celiac disease... and if I do go back full-time then my grades and pocket with suffer tremendously, and that cannot happen either. It is really a bad and over-dramatic situation. So, my questions are.... what can I do to find out if I have a thyroid disorder? Do my pre-existing conditions have a link with hypothyroidism? And, most importantly, how do I treat it without insurance?

Also, I have done some research about things that would speed up my thyroid, as a result I have increased the amount of Celtic sea salt and coconut oil in my diet, and I was condsidering taking natural iodine/sea kelp supplements and charting my temperature changes. Any thoughts on that?

I would love some seasoned advice, because I am 22 years old and and in more pain than my friends that are triple my age!

Monica.

Dear Monica,

I am in the same situation. I am 24, and have no health benefits, am a full time college student, and cannot work due to my illness. The thyroid issue I know all about! It makes you feel strange. It can do all kinds of stuff to you.

I agree with Ursa Major and CarlaB. The Lyme Disease is a possibility. IgeniX tests for that.

Google it and it will show right up. The panel is about $400. I need to have it done, but need the money first. I need a miracle.

The Thyroid is something they need to do bloodwork on often. However, there are other problems with that. In 50 percent of the cases, bloodwork turns up negative for women who actually have a sleepy thyroid. Taking your temperature upon rising is a good indicator. Mine often is 97.6 or something like that. Even when my thyroid was overactive, my body temp was low. I actually seem to get opposite symptoms when my thyroid is off. My body is messed up bad, though.

When my Thyroid is slow, I take a number of things to help it. There are a number of dietary changes you can make on top of supplements. I tried the synthyroid, but it gave me trouble sleeping, my heart was always pounding, and I was not even losing any weight. So, after two weeks, I decided to take another approach. As you did, I did research. As you know, coconut oil is very helpful. Typically, two to three tablespoons a day is what you will need. I began altering my diet, trying to avoid refined sugar and carbohydrates. Some foods like broccoli, peaches, and peanuts also slow it down. Adding a serving of fish or beans daily, iodized salt (sea salt is better when you can afford it),

seaweed products, and trying to walk daily for 20 minutes at least helped. Then I took Rosemary Leaf Extract (1 capsule) made by Solaray once daily along with Ashwaghanda (1 capsule once daily) and began feeling better and losing weight within two weeks!

Sincerely,

NoGluGirl

P.S. My doctor told me some people's bodies do not metabolize B12 well. Perhaps that is what is going on. Sometimes they just cannot absorb or use it. This is likely linked to metabolic disorders.

[CarlaB]

IgeniX tests for that.

Google it and it will show right up. The panel is about $400.

www.igenex.com

If money is an issue, have the two Western Blots done for a little under $200.

Remember though, Lyme is a clinical diagnosis ... tests only support the diagnosis. Like the biopsy for celiac, there are false negatives. In fact, the longer you have had it, the MORE likely you are to have a negative test!

[ravenwoodglass]

One thing you may want to consider doing is to get with NY state and see if you qualify for emergency medical assistance. You can get medicaid without haveing to sign up for money assistance or food stamps. If you are of low income and need medical care you are in one of the best states to get it. Do not hesitate to check out Medicaid, your situation is what it is for and for the most part social workers are very good and kind about helping you through the process. Get with them then get yourself to the doctor for an evaluation and full blood workup.

[SocietyInDenial]

Thanks for all of your responses and advice.

For the past week I have been actively charting my body temperature, and to my lack-of-surprise, it is quite low. I have ranged between 95.9 to 97.6, but never breaching 97.6. During the most active part of my day--- which is pretty much all day since I work as a chef--- my temperature was in the low 97s. I don't know what this means, or if it is normal to run a full degree lower than average, but when I saw 95.9 I was a little scared.

I am trying to take this step-by-step, so I haven't considered anything beyond charting my temperature. Since you guys have experienced this, or something of this nature, I figured that you would be able to guide me to my next step.

Also, I didn't mention it in my first post but I have an iron deficiency along with the b12 deficiency-- I don't know if this is related to hypothyroidism or Lyme's in any way.

Thanks!

[NoGluGirl]

Thanks for all of your responses and advice.

For the past week I have been actively charting my body temperature, and to my lack-of-surprise, it is quite low. I have ranged between 95.9 to 97.6, but never breaching 97.6. During the most active part of my day--- which is pretty much all day since I work as a chef--- my temperature was in the low 97s. I don't know what this means, or if it is normal to run a full degree lower than average, but when I saw 95.9 I was a little scared.

I am trying to take this step-by-step, so I haven't considered anything beyond charting my temperature. Since you guys have experienced this, or something of this nature, I figured that you would be able to guide me to my next step.

Also, I didn't mention it in my first post but I have an iron deficiency along with the b12 deficiency-- I don't know if this is related to hypothyroidism or Lyme's in any way.

Thanks!

Dear SocietyInDenial,

Those temps sound the same as mine! Even when I was hot flashing, I usually only got up to 98.0 degrees. Sometimes I am cold for no reason. I am always walking around in sweaters and sweatshirts. My parents think I am crazy. They always tease me about it. This is typical with Thyroid Disease, though.

The iron and B12 may be problems for me as well. However, they are linked to Lyme disease. Often, people have mercury poisoning who have Lyme. Lyme impairs your body's ability to absorb nutrients because of the mercury. Do you have fillings other than composite ones in your teeth?

Sincerely,

NoGluGirl

[CarlaB]

Also, I didn't mention it in my first post but I have an iron deficiency along with the b12 deficiency-- I don't know if this is related to hypothyroidism or Lyme's in any way.

I've always had to take iron supplements ... I've also had low body temperatures. I definately have Lyme. I don't know if it's the cause of your problems, but I know it was for me. Low body temperatures are commong with Lyme because it affects your thyroid ... along with all your other organs. My temps have gone up a whole degree since I started Lyme treatment and I've been able to get completely off the thyroid supplement I was taking.

[SocietyInDenial]

Dear SocietyInDenial,

Those temps sound the same as mine! Even when I was hot flashing, I usually only got up to 98.0 degrees. Sometimes I am cold for no reason. I am always walking around in sweaters and sweatshirts. My parents think I am crazy. They always tease me about it. This is typical with Thyroid Disease, though.

The iron and B12 may be problems for me as well. However, they are linked to Lyme disease. Often, people have mercury poisoning who have Lyme. Lyme impairs your body's ability to absorb nutrients because of the mercury. Do you have fillings other than composite ones in your teeth?

Sincerely,

NoGluGirl

Yeah, the other day I was running around the kitchen frantically, and I noticed that I was sweating. I decided to check my temperature and it was in the mid-97's. I was amazed! Sweating AND below 98 degrees!!!

I don't have any problems with my teeth, though I have a problem with grinding and TMJ. What happens to the teeth? How would I go about getting tested for mercury poisoning--- or is that something routinely checked when getting the Lyme's test?

Also, I have this very bizarre problem with eating and lightheadedness. EVERYTIME I eat I feel as though I am going to pass out. I have no idea where it's coming from, and when I talked to an ER doctor about it she said that she hadn't heard or experienced anything like it. I know that I have a low blood pressure, could that be the issue? Or could it be from the b12 and iron deficiencies? I feel like I eat enough throughout the day (especially since I have to taste everything that comes out of the kitchen) that my blood sugar level shouldn't be enhancing the problem. I don't know though... any words of wisdom and sage-ly advice?

[CarlaB]

I also have low blood pressure and TMJ (and grinding). In fact, I'm wearing braces right now for the last stage of TMJ treatment.

Lyme docs do a comprehensive workup. Mine checks for celiac, adrenal function, heavy metals, Lyme, coinfections of Lyme, and lots of other blood work including iron and B12 levels. To determine whether you think you need to be tested, you can look at the symptoms on Open Original Shared Link.

[ravenwoodglass]

Also, I have this very bizarre problem with eating and lightheadedness. EVERYTIME I eat I feel as though I am going to pass out. I have no idea where it's coming from, and when I talked to an ER doctor about it she said that she hadn't heard or experienced anything like it. I know that I have a low blood pressure, could that be the issue? Or could it be from the b12 and iron deficiencies? I feel like I eat enough throughout the day (especially since I have to taste everything that comes out of the kitchen) that my blood sugar level shouldn't be enhancing the problem. I don't know though... any words of wisdom and sage-ly advice?

I used to be a professional chef before my celiac became extremely severe. There is no way you are gluten free if you are working in a place where you have to taste everything before it is served!

You need to address this issue right away unless I misunderstood this. Your issues with blood sugar and B12 and Iron stores will not go away without your being strictly gluten-free. It may mean finding other work but that is what you need to do.

[SocietyInDenial]

I used to be a professional chef before my celiac became extremely severe. There is no way you are gluten free if you are working in a place where you have to taste everything before it is served!

You need to address this issue right away unless I misunderstood this. Your issues with blood sugar and B12 and Iron stores will not go away without your being strictly gluten-free. It may mean finding other work but that is what you need to do.

This is something that I think about EVERYDAY. The people that I am working with are incredibly supportive and they understand how celiac disease shapes what I can and cannot do. The things that I am eating at work, I make, and I know that they are made gluten-free. I wear gloves while working directly with wheat but I NEVER eat any of it. Anytime I do eat gluten-free food, I have my own plastic utensils and plastic plates. I make sure that things are cleaned properly if they have been touched by wheat. I try to be incredibly safe, and if I am getting exposured then it would be through cross-contamination--- but the only wheat-laden thing that I touch is bread.

I guess it is a good thing that we are a small place (it's a gourmet deli/health food/restaurant) that caters to people who have health concerns. A decent chunk of our customer base have some type of dietary restriction-- whether lactose intolerance, celiac disease, or vegetarianism/veganism. But, I am VERY adamant about the gluten-free diet.... I don't yield to the temptation because the consequences are not worth it, in my opinion. You know what I mean....

All I know is that I really want to start my own business that melds gluten-free foods and "regular" foods, all without that being the obvious agenda. I hate seeing gluten-free foods in the "special" foods aisle!

[Cruiser Bob]

This is my personal history only - as such it's only one source. I have been gluten-free for 7 years now. Insurance -well the year I did the sleep lab & broke my leg, I got to within $50 of my deductible. gluten-free diet does not involve doctors -we can/do this on our own. For me - ten years ago, I had all the usual tests. Thyroid, HDL/LDL, Iron, all of them = fine. Iga/Ige = over 50 items. Spin forward to last week - all blood tests except one (triglycerides) are fine. Iga/Ige - aparagus/clams only.

That said: ELIMINATION DIET. Once I went gluten-free, things got better, but I then stumbled into dairy/egg free. Then chocolate/coffee, then nightshades - basically everything on the favorite food & craving list.

Don't fogroe medical attention, but also, equally so, don't under estimate your own abilities. I kept a food diary for two years - that's where I started being able to see the actionreaction of my body.

Spin forward - I now, newly have a job with insurance. I'm back with the medical community, trying to work on my sleep issues and maybe food issues (that actually is coming with Biofeedback and intuitive healing - not covered). They've managed to get me on 3 prescriptions - with extreme caution on my end. I really like my neurologist, but the internest is acting more like a retail-GP with my issues. I'm trying some supplements that I think will be achieving the same end results without chemicals (B-12, Glucosime, Flax Oil).

So - Time will tell, but it is equally important to get the proper tests (school nurse??). Do yourself a huge favor and keep your own brain totally engaged with your body, it's issues and proposed treatments.

I'd hazard a guess that more than 75% of the people on this board have figured out at least half, if not all of their issues on their own, or with alternative practitioners.

Bob

[NoGluGirl]

Yeah, the other day I was running around the kitchen frantically, and I noticed that I was sweating. I decided to check my temperature and it was in the mid-97's. I was amazed! Sweating AND below 98 degrees!!!

I don't have any problems with my teeth, though I have a problem with grinding and TMJ. What happens to the teeth? How would I go about getting tested for mercury poisoning--- or is that something routinely checked when getting the Lyme's test?

Also, I have this very bizarre problem with eating and lightheadedness. EVERYTIME I eat I feel as though I am going to pass out. I have no idea where it's coming from, and when I talked to an ER doctor about it she said that she hadn't heard or experienced anything like it. I know that I have a low blood pressure, could that be the issue? Or could it be from the b12 and iron deficiencies? I feel like I eat enough throughout the day (especially since I have to taste everything that comes out of the kitchen) that my blood sugar level shouldn't be enhancing the problem. I don't know though... any words of wisdom and sage-ly advice?

Dear SocietyInDenial,

Yep, that low body temp thing is strange. I would feel like I was going to spontaneously combust, but my temp was so low! It is so weird. I sweat excessively, too. That makes it even more difficult to figure out. Even when my Thyroid was overactive, my body temp was low.

I have TMJ as well. My teeth are going bad now. I used to have good teeth. I do not know why they started going bad during the past several years. Grinding your teeth is common with TMJ. I do that some even when I am awake, because my teeth are so crooked and my TMJ is so bad. The mercury poisoning is typically included in the Lyme protocol. They can tell how long it has been in your system by testing your hair. There are other methods, too.

As Carla said, mercury is one of many things normally involved with Lyme. Babesia and other coinfections are a concern as well. Vitamin deficiencies will cause dizziness, headaches, exhaustion, mood swings, you name it! My blood pressure also tends to get low, as well as my blood sugar. One thing I recommend is do not stand up too quickly. That helps. I am a busy person, and I tend to move quickly. I make sure to eat regularly (about every four hours) with my blood sugar. Having reactive hypoglycemia is very dangerous. My father has it as well. You should get a blood sugar monitor if you can. Some are as inexpensive as $15. Making sure to eat a balance of fat, protein, and carbohydrate is a good idea as well. The Zone diet is great for that, and it is easy to do gluten-free.

You know, I was having the same idea you do! No one around here does gluten-free catering! You would think someone would. So far, I have hear nothing about it. I do not know what a Celiac would do if they were getting married! I hope I answered your questions.

Sincerely,

NoGluGirl

[Charlieswpa]

Dear SocietyInDenial,

Yep, that low body temp thing is strange. I would feel like I was going to spontaneously combust, but my temp was so low! It is so weird. I sweat excessively, too. That makes it even more difficult to figure out. Even when my Thyroid was overactive, my body temp was low.

I have TMJ as well. My teeth are going bad now. I used to have good teeth. I do not know why they started going bad during the past several years. Grinding your teeth is common with TMJ. I do that some even when I am awake, because my teeth are so crooked and my TMJ is so bad. The mercury poisoning is typically included in the Lyme protocol. They can tell how long it has been in your system by testing your hair. There are other methods, too.

As Carla said, mercury is one of many things normally involved with Lyme. Babesia and other coinfections are a concern as well. Vitamin deficiencies will cause dizziness, headaches, exhaustion, mood swings, you name it! My blood pressure also tends to get low, as well as my blood sugar. One thing I recommend is do not stand up too quickly. That helps. I am a busy person, and I tend to move quickly. I make sure to eat regularly (about every four hours) with my blood sugar. Having reactive hypoglycemia is very dangerous. My father has it as well. You should get a blood sugar monitor if you can. Some are as inexpensive as $15. Making sure to eat a balance of fat, protein, and carbohydrate is a good idea as well. The Zone diet is great for that, and it is easy to do gluten-free.

You know, I was having the same idea you do! No one around here does gluten-free catering! You would think someone would. So far, I have hear nothing about it. I do not know what a Celiac would do if they were getting married! I hope I answered your questions.

Sincerely,

NoGluGirl

Hi everybody,

I've been taking 400 mg of magnesium in the morning and before going to bed to help my TMJ and teeth grinding.It's been about 2 weeks now and I'm starting to feel a lot better.They claim magnesium is a natural muscle relaxant.