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radgirl

Is There A Connection Between Celiac/gluten And

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premature ovarian failure or possibly secondary ovarian failure (due to pituitary issues). Has anyone experienced any female hormone issues with being Celiac and having a low FSH, LH, estradiol, testosterone, and low blood calcium. Any help or suggestions is welcomed. I'm needing some answers if possible.

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premature ovarian failure or possibly secondary ovarian failure (due to pituitary issues). Has anyone experienced any female hormone issues with being Celiac and having a low FSH, LH, estradiol, testosterone, and low blood calcium. Any help or suggestions is welcomed. I'm needing some answers if possible.

Hi Radgirl- Just wanted to let you know that I have hormonal issues- my FSH is SKY high (I have enough estrogen to power three more women!). also my PTH is usually just a bit high. I'm sure more people will weigh in on this!

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Hi Radgirl- Just wanted to let you know that I have hormonal issues- my FSH is SKY high (I have enough estrogen to power three more women!). also my PTH is usually just a bit high. I'm sure more people will weigh in on this!

Thank you so much. I hope to hear from more people.

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Multiple low hormones may mean HypoPituitary. It can be hard to get a dx. Even harder to get correct treatment. ACTH Stim Testing, Insulin Tolerance Test. MRI. How are the TSH and Cortisol ? I am a member of a HypoPituitary yahoo group and they are very helpful. Have you ever had a head injury, or whiplash ? I am still struggling for answers myself.

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Multiple low hormones may mean HypoPituitary. It can be hard to get a dx. Even harder to get correct treatment. ACTH Stim Testing, Insulin Tolerance Test. MRI. How are the TSH and Cortisol ? I am a member of a HypoPituitary yahoo group and they are very helpful. Have you ever had a head injury, or whiplash ? I am still struggling for answers myself.

wow- that's innteresting. I've had 2 car accidents both with whiplash. I have Lyme disease too so I'm hoping once I've finished treatment, maybe my hormones will iron out. I haven't had a period in about 6 months. :(

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Multiple low hormones may mean HypoPituitary. It can be hard to get a dx. Even harder to get correct treatment. ACTH Stim Testing, Insulin Tolerance Test. MRI. How are the TSH and Cortisol ? I am a member of a HypoPituitary yahoo group and they are very helpful. Have you ever had a head injury, or whiplash ? I am still struggling for answers myself.

I had some pretty nasty whiplash about 11 years ago. I was in 3 car accidents in October of 1996. Accident one - hit hard on the left side, accident two - hit less hard on the right side, and accident three, I rear-ended someone. I didn't suffer any pain until May of 1997 and the pain was horrifying.

Side note - when I was 16 y.o. I lost my period for 6-9 months. It was attributed to "stress". At this time, I started to lose my hair as well.

(Sorry, I quoted myself below - dork!)

Here is some blood work:

ACTH - 17

Range - 6-48

Cortisol - 16.2

Range - 3.1-22.4

Calcium, serum - 7.9

Range - 8.5-10.6

WBC - 3.8

Range - 4.0-10.5

T3 Uptake - 23

Range - 24-39

LH - non-detectable

FSH - non-detectable

Testosterone - <10

Range - 14-76

Estrogen - 13

Range - varies, but low on at all stages of menstruation

Can you point me to this yahoo site?

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I had some pretty nasty whiplash about 11 years ago. I was in 3 car accidents in October of 1996. Accident one - hit hard on the left side, accident two - hit less hard on the right side, and accident three, I rear-ended someone. I didn't suffer any pain until May of 1997 and the pain was horrifying.

Side note - when I was 16 y.o. I lost my period for 6-9 months. It was attributed to "stress". At this time, I started to lose my hair as well.

Here is some blood work:

ACTH - 17

Range - 6-48

Cortisol - 16.2

Range - 3.1-22.4

Calcium, serum - 7.9

Range - 8.5-10.6

WBC - 3.8

Range - 4.0-10.5

T3 Uptake - 23

Range - 24-39

LH - non-detectable

FSH - non-detectable

Testosterone - <10

Range - 14-76

Estrogen - 13

Range - varies, but low on at all stages of menstruation

Can you point me to this yahoo site?

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Hi Radgirl- Just wanted to let you know that I have hormonal issues- my FSH is SKY high (I have enough estrogen to power three more women!). also my PTH is usually just a bit high. I'm sure more people will weigh in on this!

Mtndog, I guess that gives a whole new meaning to woman power :D

donna

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Mtndog, I guess that gives a whole new meaning to woman power :D

donna

:lol: :lol: :lol: :lol: OMG LMA

Can you point me to this yahoo site too?

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Hi Radgirl- Just wanted to let you know that I have hormonal issues- my FSH is SKY high (I have enough estrogen to power three more women!). also my PTH is usually just a bit high. I'm sure more people will weigh in on this!

Please pass it over - I'm first in line for some extra power!!!

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Guest Doll

Yes. Premature ovarian failure is usually caused by autoimmunity. Celiac is also an autoimmune disease. All autoimmune diseases share a genetic link.

Low blood calcium suggests hypoparathyroidism, another autoimmune disease.

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Yes. Premature ovarian failure is usually caused by autoimmunity. Celiac is also an autoimmune disease. All autoimmune diseases share a genetic link.

Low blood calcium suggests hypoparathyroidism, another autoimmune disease.

Doll, can you shed more light on this? I have also read that those with Celiac can also have low blood calcium. It's like everything is connected and I'm playing which came first, the chicken or the egg. Is it Celiacs, is it POF, is it an issue with my pituitary gland? Is it all connected and they all need to be fixed. I'm so very confused and am driving myself insane at this point.

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My doc said that the ovarian failure was a definite symptom of celiac/gluten intolerance. Are you following a gluten-free diet? I am hoping this will help me <_< He said it would...

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Guest Doll
Doll, can you shed more light on this? I have also read that those with Celiac can also have low blood calcium. It's like everything is connected and I'm playing which came first, the chicken or the egg. Is it Celiacs, is it POF, is it an issue with my pituitary gland? Is it all connected and they all need to be fixed. I'm so very confused and am driving myself insane at this point.

Sure. I can *try* and help. :) First of all, if you have not been officially dx'd with any off the above, it is very possible that some of your low hormone (and calcium) levels *are* due to Celiac and malnourishment. Undiagnosed Celiac has been linked to unexplained infertility and irregular periods, very likely as a result of low hormone levels. As far as I know, a specific reason for the low hormone levels has not been pinpointed, but likely it is due to malnutrition. If this is the case, it may correct itself after you have been on the gluten-free diet for awhile.

However, if you have tested positive for autoantibodies that suggest another autoimmune disease like hypoparathyroidism, then *likely* the gluten-free diet will not help. This would mean that you have developed *another* autoimmune disease in addition to Celiac. It is very common to have more than one autoimmune disease.

*DO NOT* drive yourself insane! That will not help anything! :)

You need to work with your doctor, who can determine what is going on and the cause. This may clear up on the gluten-free diet, or it may need additional treatment. All *you* have to do is stay gluten-free and work with your doc. Feel free to PM me if you need more info.

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I have been doing a gluten-free diet for quite a while now. However, I may keep falling prey to CC with things like fries, corn chips, and other items. I also notice that I'm always starving at all hours of the day. I can eat a meal and my stomach is physically distended and am even a little uncomfortable, but find myself still hungry or with an empty feeling in my stomach. I guess I never really thought about the whole nourishment piece. The reason I am going crazy with all of this is that I have to wait to get to all my docs to find out what is going on. Waiting is the hard part.

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Doll, can you shed more light on this? I have also read that those with Celiac can also have low blood calcium. It's like everything is connected and I'm playing which came first, the chicken or the egg. Is it Celiacs, is it POF, is it an issue with my pituitary gland? Is it all connected and they all need to be fixed. I'm so very confused and am driving myself insane at this point.

How true! I can picture a very intricate design of dominos, each domino being an autoimmune disease. Now, we may be diagnosed with one or two different auto-immune diseases, but which was the "trigger" domino, the one that started the whole ball rolling? Maybe celiac or hypothryoidism is in the middle of the domino chain, and after years of suffering, finally get those diagnosed, but what unknown autoimmune problems are at the beginning of the domino chain that set it all off?

Really makes you wonder........

Karen

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How true! I can picture a very intricate design of dominos, each domino being an autoimmune disease. Now, we may be diagnosed with one or two different auto-immune diseases, but which was the "trigger" domino, the one that started the whole ball rolling? Maybe celiac or hypothryoidism is in the middle of the domino chain, and after years of suffering, finally get those diagnosed, but what unknown autoimmune problems are at the beginning of the domino chain that set it all off?

Really makes you wonder........

Karen

You hit the nail on the head. This is exactly what I am thinking. What set it off? What came first? The part that scares/concerns me the most is am I getting the proper care. Do I just treat the one thing and hope the rest fix themselves or do I treat it all as it all happens? This is why I am so confused and so desperate to put all the pieces together. I guess when one thing happens, it is like that rolling ball and everything else begins to fail. You never really know what started what, but in the end you must treat all of it in order to get better. I hope that my thought process if correct, but right now I am so confused and afraid that I'm not sure I'm thinking clearly. What ticks me off the most is that I know I've been suffering for years (at least 10+) with "something" but no doctor on this earth has been smart enough to figure out what the heck is wrong or at the very least, not dismiss me as being crazy.

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Guest Doll
I have been doing a gluten-free diet for quite a while now. However, I may keep falling prey to CC with things like fries, corn chips, and other items. I also notice that I'm always starving at all hours of the day. I can eat a meal and my stomach is physically distended and am even a little uncomfortable, but find myself still hungry or with an empty feeling in my stomach. I guess I never really thought about the whole nourishment piece. The reason I am going crazy with all of this is that I have to wait to get to all my docs to find out what is going on. Waiting is the hard part.

To things I want to point out: you need to watch (stop) the CC issues, and you need to be giving your body healthy *nourishment* aside from fries, etc. You can be eating gluten-free, but if all you're eating is "junk" foods, you body is not really much better off and you can still be very nutrient deficient. I'm not saying this is what you're doing, but this is what your need to avoid. All of those foods offer empty calories and not much else. Think about it this way...garbage in...garbage out. You wouldn't put sludge in the gas tank of you car, right? It would break down the engine and the car would run horribly. So don't put crap in your body!

I suggest you start with a multi-vitamin (with iron if yours is low), calcium, folic acid, and Omega 3 supplements. This will help with any deficiencies and will help reduce inflammation in your intestines. Start eating *healthy* meals throughout the day. An example might be brown rice, salmon, and veggies for lunch. Have an orange or apple for dessert. If you must have a snack, there are gluten-free rice chips, and also Cool Ranch Doritos are gluten-free. Make these a treat though. You can make your own gluten-free fries by slicing up potatoes and brushing them with olive oil (very healthy). Put them in the oven to bake, then top with salsa (Tostitos is gluten-free) and ketchup. Make sure you are taking in enough calories from healthy sources. Your body needs all of the above to recover from Celiac. No CC, supplements, and a healthy diet.

I know waiting IS hard, but you have the power to do something to help yourself in the meantime, no matter what the results. :)

I was so sick with Celiac that I welcomed the gluten-free diet as soon as I got my offcial Dx. I also react violently when glutened. Because of this, I am lucky in a way (although no one likes to feel like they're dying when CC'd!). That said, if I know something could be CC'd, I avoid it. I understand how hard it is for those who do not have to be as careful. To be honest, I don't blame them at all. It is very hard for some. Take it one day at a time.

P.S. In Canada, McDonald's fries are gluten-free. :) Reason why I love Canada #134. In the US, some Celiacs can eat McDonald's fries, some cannot (in the US they use wheat starch). Some people react to wheat starch, some don't. In Europe, wheat starch is considered OK for Celiacs since the amount of gluten is so low. In North America, we use CODEX standards. It really depends on what you feel comfortable with and how sensitive to gluten you are (and how you react). It's a personal choice.

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Guest Doll
How true! I can picture a very intricate design of dominos, each domino being an autoimmune disease. Now, we may be diagnosed with one or two different auto-immune diseases, but which was the "trigger" domino, the one that started the whole ball rolling? Maybe celiac or hypothryoidism is in the middle of the domino chain, and after years of suffering, finally get those diagnosed, but what unknown autoimmune problems are at the beginning of the domino chain that set it all off?

Really makes you wonder........

Karen

Now granted, it may be *possible* that gluten could be the catalyst (speeds it up) for the development of other autoimmune diseases in those *with Celiac*, but that doesn't mean that it's the cause. I know there is some doctor out there promoting his own agenda that keeps pushing this idea, but the rest of science doesn't back him up. Gluten (nor any one trigger) is NOT the cause for all autoimmune diseases, no matter what anyone tells you. Most likely there are different viruses and/or dietary triggers for different autoimmune diseases. Gluten may speed up the course, but it is not the initial cause.

Taken from Celic.com:

Celiac.com 08/08/2002 - Dr. Anette-G. Ziegler, of the Academic Teaching Hospital Muenchen-Schwabing in Munich, Germany, and colleagues looked at seven first-degree relatives of patients who had type 1 diabetes and were under seven years of age and found that their titers of type 1 diabetes-associated autoantibodies did not improve after one year on a gluten-free diet. At the same time the subjects' IgG antibody titers to gliadin were reduced. The researchers conclude that even though studies have shown that a gluten-free diet protects against autoimmune diabetes in animal models, it does not appear to do so in humans, although there is research that shows that it can reduce the frequency of type 1 diabetes in patients with celiac disease. *According to the researchers, gluten is not the driving antigen for type 1 diabetes-associated islet autoimmunity.*

___________________________________________________________________________________________________

Interestingly, EXCESS gluten (gluten + diet) also *protects* from Type 1 diabetes (an autoimmune disease). Perhaps this is because the excess gluten keeps the immune system busy, so it cannot react to the REAL trigger for Type 1 diabetes (no gluten would help with, but not cure, the leaky gut, the point of entry for the trigger):

Taken from Pub Med:

Gluten-free but also gluten-enriched (gluten+) diet prevent diabetes in NOD mice; the gluten enigma in type 1 diabetes.

Funda DP, Kaas A, Tlaskalov

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To things I want to point out: you need to watch (stop) the CC issues, and you need to be giving your body healthy *nourishment* aside from fries, etc. You can be eating gluten-free, but if all you're eating is "junk" foods, you body is not really much better off and you can still be very nutrient deficient. I'm not saying this is what you're doing, but this is what your need to avoid. All of those foods offer empty calories and not much else. Think about it this way...garbage in...garbage out. You wouldn't put sludge in the gas tank of you car, right? It would break down the engine and the car would run horribly. So don't put crap in your body!

I suggest you start with a multi-vitamin (with iron if yours is low), calcium, folic acid, and Omega 3 supplements. This will help with any deficiencies and will help reduce inflammation in your intestines. Start eating *healthy* meals throughout the day. An example might be brown rice, salmon, and veggies for lunch. Have an orange or apple for dessert. If you must have a snack, there are gluten-free rice chips, and also Cool Ranch Doritos are gluten-free. Make these a treat though. You can make your own gluten-free fries by slicing up potatoes and brushing them with olive oil (very healthy). Put them in the oven to bake, then top with salsa (Tostitos is gluten-free) and ketchup. Make sure you are taking in enough calories from healthy sources. Your body needs all of the above to recover from Celiac. No CC, supplements, and a healthy diet.

I know waiting IS hard, but you have the power to do something to help yourself in the meantime, no matter what the results. :)

I was so sick with Celiac that I welcomed the gluten-free diet as soon as I got my offcial Dx. I also react violently when glutened. Because of this, I am lucky in a way (although no one likes to feel like they're dying when CC'd!). That said, if I know something could be CC'd, I avoid it. I understand how hard it is for those who do not have to be as careful. To be honest, I don't blame them at all. It is very hard for some. Take it one day at a time.

P.S. In Canada, McDonald's fries are gluten-free. :) Reason why I love Canada #134. In the US, some Celiacs can eat McDonald's fries, some cannot (in the US they use wheat starch). Some people react to wheat starch, some don't. In Europe, wheat starch is considered OK for Celiacs since the amount of gluten is so low. In North America, we use CODEX standards. It really depends on what you feel comfortable with and how sensitive to gluten you are (and how you react). It's a personal choice.

Thanks Doll for your reply (sorry, my period is on it's way and I'm feeling a little singled out here - so silly though). As far a supplements go, I am the queen of that. I take many vitamins and minerals. What is worse is that I take about 1300mg of calcium per day, yet still have low blood calcium. Duh, that could be because I'm being CC'd with some of the foods I eat like oats, corn chips, fries, and who knows what else. I eat a very healthy diet, but often crave something not so good for me, that is why I eat some of the foods I do (although not often because I can't). Not to mention, my foods are very limited to begin with. Celiacs or not, I have a huge issue with wheat. It never dawned on me that I could be getting sick from foods fried in the same oil as wheat-based foods. Why is this finally making sense to me now? Possibly because of my resulting blood work. I have to admit, it is hard. I feel very isolated right now and very incomplete. I do my best to avoid everything that makes me sick, yet when you sit down and look at it again, there is something else in there. I never knew oats could be contaminated with wheat due to their growing and form of processing. Blah, that is all I can say. Bare with me as many things are not making sense to me, yet the pieces of the puzzle are finally coming together. In the last couple of weeks, I feel I've been slapped in the face numerous times. Right now I feel it's the world against me and everything is very unfair. (PMS talking here - that has been another nightmare).

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Guest Doll
You hit the nail on the head. This is exactly what I am thinking. What set it off? What came first? The part that scares/concerns me the most is am I getting the proper care. Do I just treat the one thing and hope the rest fix themselves or do I treat it all as it all happens? This is why I am so confused and so desperate to put all the pieces together. I guess when one thing happens, it is like that rolling ball and everything else begins to fail. You never really know what started what, but in the end you must treat all of it in order to get better. I hope that my thought process if correct, but right now I am so confused and afraid that I'm not sure I'm thinking clearly. What ticks me off the most is that I know I've been suffering for years (at least 10+) with "something" but no doctor on this earth has been smart enough to figure out what the heck is wrong or at the very least, not dismiss me as being crazy.

You're not crazy. Obviously you have something going on. Don't forget that abnormal hormone levels can make you feel "out of whack". You've told me about your test results, what other symptoms do you have? Do you feel comfortable sharing your medical history and/or your family's medical history? PM me if you want. You should feel at least somewhat better fairly soon on the gluten-free diet if you have Celiac, but only if you cut out CC.

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Thanks Doll for your reply (sorry, my period is on it's way and I'm feeling a little singled out here - so silly though). As far a supplements go, I am the queen of that. I take many vitamins and minerals. What is worse is that I take about 1300mg of calcium per day, yet still have low blood calcium. Duh, that could be because I'm being CC'd with some of the foods I eat like oats, corn chips, fries, and who knows what else. I eat a very healthy diet, but often crave something not so good for me, that is why I eat some of the foods I do (although not often because I can't). Not to mention, my foods are very limited to begin with. Celiacs or not, I have a huge issue with wheat. It never dawned on me that I could be getting sick from foods fried in the same oil as wheat-based foods. Why is this finally making sense to me now? Possibly because of my resulting blood work. I have to admit, it is hard. I feel very isolated right now and very incomplete. I do my best to avoid everything that makes me sick, yet when you sit down and look at it again, there is something else in there. I never knew oats could be contaminated with wheat due to their growing and form of processing. Blah, that is all I can say. Bare with me as many things are not making sense to me, yet the pieces of the puzzle are finally coming together. In the last couple of weeks, I feel I've been slapped in the face numerous times. Right now I feel it's the world against me and everything is very unfair. (PMS talking here - that has been another nightmare).

I hear you on the PMS issue! :) Like I said, hormones deserve much more credit than we give them. ;) I really think the continuous CC issue is causing issues. If your intestines are damaged (even if asymptomatic), you will not absorb calcium from your diet or supplements. You HAVE to stop the CC! There are lots of gluten-free snacks to eat instead.

That said, you could still have an issue with your parathyroid gland, but I would get started on a *strict* gluten-free diet and go from there. Do you take any medication (i.e. for excess stomach acid)? Some medications will interfere with absorption.

As for the malnourishment issue, people who cut out a lot of foods from their diets can easily end up malnourished. Weightloss, fatigue, weakness, muscle wasting, brittle hair and nails, and symptoms of vitamin deficiencies such as tingling in the arms and legs (B12 deficiency) can indicate malnourishment.

Celiac Disease does suck, but we all have our cross to carry, right? I understand it is very hard to be positive when you are so ill. Especially when you have felt that way for a long time. Whoever said that "those without health have nothing" was a very smart person. :D If you see eating as your medicine, it may make it easier to deal with.

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I hear you on the PMS issue! :) Like I said, hormones deserve much more credit than we give them. ;) I really think the continuous CC issue is causing issues. If your intestines are damaged (even if asymptomatic), you will not absorb calcium from your diet or supplements. You HAVE to stop the CC! There are lots of gluten-free snacks to eat instead.

That said, you could still have an issue with your parathyroid gland, but I would get started on a *strict* gluten-free diet and go from there. Do you take any medication (i.e. for excess stomach acid)? Some medications will interfere with absorption.

As for the malnourishment issue, people who cut out a lot of foods from their diets can easily end up malnourished. Weightloss, fatigue, weakness, muscle wasting, brittle hair and nails, and symptoms of vitamin deficiencies such as tingling in the arms and legs (B12 deficiency) can indicate malnourishment.

Celiac Disease does suck, but we all have our cross to carry, right? I understand it is very hard to be positive when you are so ill. Especially when you have felt that way for a long time. Whoever said that "those without health have nothing" was a very smart person. :D If you see eating as your medicine, it may make it easier to deal with.

Ok, this is going to sound quite odd. But for a long while now, I have noticed that when I have my leg or arm slightly crossed, I get the pins n' needles feeling. Is this also due to a potential B12 deficiency? I do take Protonix for my GERD/dyspepsia, but from the research I've done there is no link to calcium leaching. I also do not take the 2 together. Sounds like CC is my main issue at this point although I've been living a gluten-free (or what I thought was gluten-free) lifestyle for many years and from the looks of it oats, and a few other items that I eat on a regular basis are a big part of the problem.

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Guest Doll

I think the tingling you're having sounds like a mechanical issue and probably nothing more. That means, I think that what you feel is normal, and happens from decreased blood flow to your arms and legs when they are crossed. I think you're OK in this area! :)

I would think that any anti-acid can *potentially* interfere with calcium absorption (calcium is absorbed best in an acidic environment), but check with your pharmacist or doctor to be sure.

I agree that CC is a big factor here. Hopefully things will improve as time goes on.

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