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Confused And Overwhelmed


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10 replies to this topic

#1 hmseyer21

 
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Posted 04 September 2011 - 01:55 PM

I'm going to give you a bit of history and basically beg for advice, I am so overwhelmed.

In 2002, I was diagnosed with hypothyroidism. I was 24 years old. My family doctor put me on synthroid and antidepressants. The antidepressants made me crazy, so I took them only for about 4 months. I felt a little better but would have bouts of depression and gained about 10 pounds pretty quickly. I started off very healthy at about 135.
My levels were managed on the high end on about 75 mcg for a couple of years.
In 2005, I got pregnant with my first child. I started seeing an endocrinologist and he kept my levels on the lower end of normal and I felt okay. Better than before, but still not too great. I also began using generic levothyroxine around this time. I was really sick during the first trimester, but got a little better once I hit the second. I went full term, but my child was born with several birth defects(heart, spine, hearing loss, and eye issues) My levels were kept normal during the pregnancy and genetic tests were ran to see if they could diagnose him with a syndrome, but nothing came back.
My levels were a little up and down after the pregnancy, but got under control pretty quickly.
In 2007, I got pregnant with my second child and had a miscarriage at 10 weeks. I was completely devastated and began to research natural ways of living. I didn't know what else to do but to try to be as healthy as possible.
Over the next six months, my son was getting stomach viruses every few weeks and was failing to thrive. He was referred to a gastroenterologist. He suggested that my son may have celiac disease because he had a lot of symptoms. They did bloodwork, a stool sample, and an endoscopy. His tests were all negative and he was diagnosed with lactose intolerance. During this time of testing, I became pregnant again. After reading about celiac disease and before getting my son's tests results, I removed gluten from my diet because I was afraid I had it too and that may have caused my miscarriage. After the tests for my son came back negative, I assumed I didn't have it, mainly because it was soooo hard to be so sick and try to adopt a gluten free diet at the same time. During this time, my OBGYN ran some tests and found out I have a genetic blood clotting disorder called mthfr. I was told this could have been the cause of the birth defects in my first child because with this disorder, the body doesn't absord folic acid and other B vitamins properly. So I began taking a ton of folic acid, blood thinner shots, and B6 and B12. My son was born without any problems.
About 4 months after this pregnancy, my thyroid levels became extremely hyper. I had never experienced these symptoms and it was extrememly hard to cope with. After a couple of months of dealing with this, I decided to stop taking my thyroid medicine. I was in an extreme state of desperation with two young children and the extreme symptoms of hyper made me think maybe my thyroid was working again.
WRONG! In December of 2008, after two months of no levothyroxine my TSH was 219, my T3 was 50(low), and my Free t4(low) was 49, Oops, guess that was a really bad decision. So I began taking levothyroxine again and my levels seemed to be mostly normal after a few adjustments.
In August 2009, I became pregnant again. Another healthy baby was born in April 2010. But I started going through the hyper to hypo trainreck again. This past summer I was taking 137 mcg and started feeling the extreme symptoms of hyper again. It was awful again and I had trouble coping. So after getting tested, I was right, and they lowered my dose to 112. Two months later, I began feeling hypo, rechecked, and my TSH was at 13. So instead of putting me in between at 125, my annoying endocrinologist would not listen to me and put me on 150.
Last month, week after going on the dosage f 150, I started seeing a new doctor who tested me for a lot of things, including hashimotos. She said it sounded like I have all the symptoms, and suggested I start eating a gluten free diet to see how my body responds. So two weeks ago, I followed her advice and started eating gluten free. Last week, I got a call saying I was low in vitamin D levels, and that my bloodwork suggest that I have hashimotos. My antithyroid peroxidase was 440 and apparently normal is below 35. My Free T3 was also on the low normal end, but total t3 was normal. She didn't recheck TSH or T4 since I had just changed my dose a week before.
This past week, I began feeling extremely hyperthyroid again, and I am having trouble coping with the symptoms. So I am now taking my 112 dosage until I can see my current physician to put me on 125. I'd rather be hypo, hyper symptoms make me feel crazy.
So now after all these years, I find out I most likely have hashimotos. I know nothing about this and I honestly hate chagning my diet so drastically. I will be honest and say I despise having to be gluten free and alter my lifestyle so much. I feel like emotionally if I could get back on track, I wouldn't be so overwhelmed, but I am so confused at what to do. I don't feel any better so far, I really feel worse to be honest. I want to eat bread, but I won't because if it is truly causing me to be sick, it isn't worth it. Anyone have advice to help me understand what is going on? I am so overwhelmed today and I just want to be happy. I have a fantastic life and a ,wonderful family, it grieves my soul that these health issues are preventing me from enjoying my blessings. :(
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#2 eatmeat4good

 
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Posted 04 September 2011 - 10:10 PM

Gluten can make you have a lot of the symptoms you have that cause you to say you had trouble coping. It can cause depression, anxiety, weight gain, messed up metabolism and Hashimoto's. You are likely experiencing withdrawal from gluten. I have Hashimoto's and DH (Dermatitis Herpetiformis) the skin form of Celiac, and a lot of neurological problems directly related to gluten. I only know this because they went away when I went gluten free. Although it is inconvenient to have to be gluten free, if you can stay hopeful, you may find that many things you never thought could get better actually do. Gluten interferes with so many things in the body and the way it metabolizes...and in the brain as well. I no longer have anxiety or depression at all unless I get glutened. I thought they were related to Hashimoto's but they seem to be directly gluten related. It is amazing that you have a Dr. smart enough to recommend that you try being gluten free. That is truly something to be thankful for. You may be surprised at what this does for your health and sense of well-being. There is no slice of bread worth the price of gluten to your body. Hang in there. I can't help but be excited for you because you are probably going to be feeling some wonderful benefits to being gluten free. Once the gluten withdrawal blues leave you that is. Gluten acts like an opiate and tells your brain you need more, more, more, of the very substance that is harming you. You will be fine if you can get through this without giving in. It is a big cahllenge and always difficult to change behavior and especially tastes we have developed, but you sound very committed to doing this so you can be the best mom you can be to your children. I admire you for what you have been through and you have the strength to get through this too. Good luck. Hope you will post about your symptoms that resolve after being gluten free for a time.
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Healing is a matter of time, but it is sometimes also a matter of opportunity.
--Hippocrates

#3 pricklypear1971

 
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Posted 05 September 2011 - 04:09 AM

Also add a good multivitamin. Gluten and Hashi people are low on lots of things and a multi helps. Vitamin/ mineral supplements help balance things out. Make sure you get mild exercise 3x a week, too.
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Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#4 hmseyer21

 
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Posted 05 September 2011 - 12:37 PM

Thank you so much. Just encouragement that things can get better as you've experienced gives me more motivation to keep going. Do you know how long withdrawals usually last? l

Gluten can make you have a lot of the symptoms you have that cause you to say you had trouble coping. It can cause depression, anxiety, weight gain, messed up metabolism and Hashimoto's. You are likely experiencing withdrawal from gluten. I have Hashimoto's and DH (Dermatitis Herpetiformis) the skin form of Celiac, and a lot of neurological problems directly related to gluten. I only know this because they went away when I went gluten free. Although it is inconvenient to have to be gluten free, if you can stay hopeful, you may find that many things you never thought could get better actually do. Gluten interferes with so many things in the body and the way it metabolizes...and in the brain as well. I no longer have anxiety or depression at all unless I get glutened. I thought they were related to Hashimoto's but they seem to be directly gluten related. It is amazing that you have a Dr. smart enough to recommend that you try being gluten free. That is truly something to be thankful for. You may be surprised at what this does for your health and sense of well-being. There is no slice of bread worth the price of gluten to your body. Hang in there. I can't help but be excited for you because you are probably going to be feeling some wonderful benefits to being gluten free. Once the gluten withdrawal blues leave you that is. Gluten acts like an opiate and tells your brain you need more, more, more, of the very substance that is harming you. You will be fine if you can get through this without giving in. It is a big cahllenge and always difficult to change behavior and especially tastes we have developed, but you sound very committed to doing this so you can be the best mom you can be to your children. I admire you for what you have been through and you have the strength to get through this too. Good luck. Hope you will post about your symptoms that resolve after being gluten free for a time.


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#5 pricklypear1971

 
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Posted 05 September 2011 - 04:37 PM

Depends. I was a raging lunatic for a week.

Had to give up milk Thursday (lower iodine for DH) and that is driving me nuts. Gluten was easy in comparison.
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Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#6 hmseyer21

 
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Posted 05 September 2011 - 05:10 PM

We eat minimal dairy since we are all lactose intolerant but to give up all dairy would be tough. :( I have a feeling it might be causing some issues too. I have craved dairy since going Gluten-Free. One thing at a time I guess. I have tried total elimination before and only made it 3 days. I decided that I could do gluten first then work on the rest. Thanks again. I have a feeling I will be on here often since you all understand.
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#7 eatmeat4good

 
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Posted 05 September 2011 - 08:29 PM

Withdrawal got me for a bit longer...like probably 3 weeks...but it's because I refused to give up dairy. Even though I read that it is usually a problem, without wheat I felt that cheese and corn tortilla's were the only foods left on earth...so I had problems until I realized that yes, I too, could not eat dairy. I still did it. Cottage cheese and yogurt...but after enough experimentation, I realized that gluten was NOT my only problem...and I had to give up iodine foods too due to the DH....but once I got rid of them all....recovery went pretty fast...Withdrawal was bad...but once I learned to live with cravings....I was ok... Casein and gluten tend to be opiates for the brain in some people. That is why you often see gluten and casein free diets for children with Autism spectrum disorders....I wonder if it should be the diet for a lot more of us...like those of us who deal with depression and anxiety symptoms too. You are the only one who can tell if dairy is a problem for you....if it is only gluten though...some people have withdrawal symptoms for longer periods of time and some are ok after a couple of weeks. However, it all comes raging back even with trace gluten or cross contamination. Hope this isn't the case for you but it certainly is for me.

I wish I'd learned of this thing called gluten years ago...don't you wonder?
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Healing is a matter of time, but it is sometimes also a matter of opportunity.
--Hippocrates

#8 pricklypear1971

 
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Posted 05 September 2011 - 08:51 PM

Funny you mention it... I read about it in connection with Hashis but the description didn't sound like me.

I see incomplete descriptions of celiac/gluten problems everywhere. It boggles my mind.

I can't understand how something that effects 1 in 133 people is not routinely screened for. Especially in vulnerable populations. Having Hashis puts me at roughly 30% chance. Geez. They worry about my cholesterol, risk of diabetes, breast cancer BUT NOT ONE SCREENED ME FOR CELIAC.

I cry BS on that one!
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Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#9 hmseyer21

 
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Posted 05 September 2011 - 09:15 PM

I hear you on the cheese and corn tortillas!!! I have Mexican for half my diet the past two weeks. I honestly have not gotten to the point of getting super serious about cross contamination. That is overwhelming to even think about. I know I will eventually have to, but I'm doing this in baby steps. I may have accidentally cross contaminated in the past two weeks but I felt better the first two days, then i have gotten worse since. I feel like an alien has taken over my body, I have felt this way in the past too and I know my thyroid is causing it.
I keep wondering if gluten caused my thyroid issues or is just related. I wonder if hashis came on after years of thyroid problems or if I developed it because of gluten.
Kind of like trying to figure out if the chicken or egg came
first.
I have never had a severe allergic reaction but I know I am probably gluten sensitive. I don't mind cutting out gluten so much honestly it's worrying about cross contamination that I feel overwhelmed with right now.
Do you think I should glutenate and be tested or just keep on trucking with the diet? I am just hoping I will be able to stop thinking so much about how to eat. I am still eating food that is good it's just the psychological aspect of it all.
I think it's crazy too how many doctors do not take these things seriously. It took me a while and many years of suffering but I am definitely thankful to have found one who knows what she is talking about. I have my follow up appointment in 3 weeks. I wish it were tomorrow!
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#10 hmseyer21

 
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Posted 05 September 2011 - 09:17 PM

Oh and I don't have DH but I do have keratosis pilaris. Do you know if that's related? It seemed to be better for 2 days but now is worse. Do you think that is because of withdrawal?
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#11 eatmeat4good

 
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Posted 06 September 2011 - 01:17 AM

I've seen posts in the archives here that keratosis pilaris cleared up on the gluten free diet...but I don't know how it is related...only that there are many skin conditions associated with gluten and Celiac...not just DH. Although cross contamination and trace gluten are overwhelming to think about that might be why you cleared up for the first days of your diet and then reacted. Many people get better when they go gluten free then become hypersensitive to cross contamination as your body rebels against that which has been poisoning it for so long. You might have to pay close attention to traces of gluten in order make any progress. I know it sucks...it did for me too. But it is very common for people to have just as serious a reaction to trace gluten as if they had eaten a sandwich or slice of pizza. It is maddening. I didn't want to have to be obsessed about food or trace gluten either...but the more vigilant I got the more recovery I experienced. It is a learning process to be sure. Be patient with yourself but keep your mind focused on being more vigilant about eliminating all sources of gluten so you can get maximum benefit to the diet. I hate to say it..but it is imperative and it might be the reason you are feeling yucky. It has taken me a full year to learn to be really good at avoiding all sources of gluten. That's why I say be patient with yourself. My first gluten free meal eating out...I ordered Kebabs and rice at a Mediterranean restaurant...only to find that 3/4 of the way through the meal...my rice was a pilaf with little vermicelli threads of pasta all through it. It didn't occur to me that rice might have gluten. I laugh about that now....as I won't eat out and read packages thrice before consuming the product...but I was very pleased with my decision to go gluten free....until the first dinner was over and I was completely glutened and a complete failure at being gluten free....but still it was part of my learning process. I too wonder if I had learned of gluten or Celiac sooner if I might have avoided the hashimoto's disease. I really do not know which is worse...thyroid symptoms?...or glutening symptoms...they are both awful...

And I agree with the above posts that something that effects 1 in 133 of the entire population should be screened for on a regular basis. Yet we beg Dr.'s for an answer to our seemingly mysterious symptoms, medical problems and mental health problems, only to find out years into the disease process that it was wheat all along. Every single bread loaf should carry a warning label....if the damned cigarette companies have to label their product as being scientifically potentially harmful to your health, then why doesn't Bread and Pasta have to carry a warning label that the contents could be damaging to 1/133 of the population???? It is unbelievable really.
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Healing is a matter of time, but it is sometimes also a matter of opportunity.
--Hippocrates




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