Four Months & Falling Apart

[snoopy]

It's been four months since I've been diagnosed with celiac disease. On the positive side, I am no longer anemic, I sleep better, and have more energy. On the down side, I've had HUGE hormonal swings, weekly migraines, and gained 15 (unwanted) pounds. I have a wonderful husband and four children, but my emotional outbursts are hurting my family. Please help me. I'm trying to exercise, I know I could eat better (when I don't know what to eat, I tend not to eat), but I'm thinking I need to go on the pill or Prozac. I think I'm too young (and regular) for menopause (I'm 43). HELP!

[Guhlia]

I had the EXACT same reaction to the gluten free diet when I was first diagnosed. After a couple of months gluten free I completely lost it and had a major breakdown (I guess that's what it was)... Anyway, they put me on antidepressants and anti-anxiety meds and it just made things worse for me. I credit the emotional breakdown to several things including dietary changes (vitamin and mineral intake changes) as well as stress from the gluten free diet. Changing your entire diet (and lifestyle) is a really hard thing to do. Don't be too hard on yourself about having a hard time. I don't think it's supposed to be easy. I found that the things that helped me the most were a strong support system (this message board is a life saver, as well as an understanding family), good gluten free food choices to substitute for your old favorites, and a vitamin supplement. You may also want to talk to your doctor about your changes in mood if you're worried about it affecting your family. I found that medication did more harm than good, but that was just my experience. Lots of other people have much better experiences with the meds. If your husband is supportive of you as mine was, it may help to sit down with him and go over all the things that are bothering you regarding your family. He may be able to help you come up with some simple solutions that will work for both of you in controlling your emotions during this stressful time. You may also want to look into seeing a nutritionalist to make sure that you truly are maintaining a gluten free diet. I know that when I get glutened I get very moody and irritable. Exercise may also help with the moodiness, the weight gain, and even the headaches.

Good luck! I hope you're feeling better soon. Don't forget that the people on this message board are always here to listen and help whenever possible. It's really a great group of people and they're very supportive. Sometimes it just feels good to not feel alone. You're not alone here.

[penguin]

I've been gluten-free for almost two months and I lose it at least once a week. My DH is really supportive, but I know he worries. He expected me to be emotional for a while. I also cry every time I get glutened, I think depression is a symptom for me. Hang in there, it is hard to change everything, and to know it's permanant. What keeps me going is that now I can be healthy, and I know I'll get used to it eventually...

It all just takes some time

[floridanative]

My money is that you are experiencing perimenopause. I got the book 'What your doctor may not tell you about premenopause (starts even before perimenopause). I'm only 42 and this book changed my life. Got it for $2 plus frt. (less than $6) on amazon .com. It offers natural remedies instead of rx meds and my doctor even encouraged me to follow the books advice before started Lexapro. I use St. John's Wort in addition to the books suggestions and I'm like a different person. My symptoms started before the diet since I wasn't dx'd at the time. Oh the author is John Lee. He was a pioneer on the subject and he also wrote a follow up relating to actual menopause and that will be the next one I'll get. Hopefully that's still a few years away for me. I was on the natural therapies for appox. three months before I went off gluten. The only changes for me post gluten-free were positive and I've never felt better as an adult. Good luck!

p.s. as usual most docs are behind on anything to do with menopause so do your own research as most docs won't do anything but give you durgs you may not need instead of cheaper, better for you body therapies like natural progesterone cream, normal vitamins and Evening Primose Oil - even says gluten free on the box!.

[StrongerToday]

Same story here too! I went gluten-free/DF in August and was doing great until the holidays. I did have some external stresses (huge project at my job went "live", my daughter was ill, ex-husband... blah blah blah). I don't think the holidays helped either. I was afraid to eat almost anything, even foods I knew were safe. I starved thru x-mas dinner at my mom's. I wasn't sleeping. I was NOT the person I wanted or knew I should be.

I called my dr and we agreed it was time to start an anti-depressant and therapy. Both have done wonders for me. I feel like my old self. I know I made the right decision for me.

Work with your dr and/or therapist to see what works for you!

[happy4dolphins]

Dear Snoopy,

It sounds like you are pretty normal to me and I'm soooooooooo glad that you shared your thoughts and feelings with us. IT helped me a ton to read that. I too, do well to ok for a bit and then break down. Soometimes I can feel it coming and other times it just comes out without warning.

I tell my hubby it took me 33 years to eat this way and it'll take another 33 years to get the new diet down. AH HAAAAAAAAAAAAAAAAA!!!! It seems like after a break down, I come back stronger again, and then repeat the process. I've only be gluten-free since 2005 and so far have gone 2 1/2 weeks totally gluten-free that I know of. I do well for a few days at a time and then have a cave in.

Thanks all for sharing your breakdowns too.

Dolphin dances,

Nicole

[Lollie]

I'm so sorry to hear all of the emotional problems you all have had......but, I 'm a little glad you guys shared! I thought it was just me. I do the same things. I am real happy, totally in control for a while, then BAM out of no where I'm either in tears or yelling and angry or both. I had these symptoms prior to the diet, and I had hoped that going on the diet would fix them. But like everyone else, I still have these problems. I have considered going and talking to my doc about everything going on in my life, i.e. my dad passed away in Sept. after a year long battle with cancer, my mom is now alone and having medical problems, me finding out about celiac and changing my entire lifestyle, and then finally my fledgling business. All of which are a complete and total change, and very stressful by themselves, much less combined.

I share this because I hope to read this and get some advice. I was going to start a topic when I got on today about this very thing!

I wish I was more helpful......

Lollie

[key]

Snoopy,

I think this can be a symptom especially if you get gluttened by accident, etc. It may not be long enough for you to have recovered completely. I know alot of people on here have gone on an antidepressant to help with stuff. I did, but I hate drugs and only stayed on it for a week.

Lollie,

SOrry you are having these issues too. I have three boys and find myself very down about stuff on and off. I will do great for a week or more, then go through days of moodiness and being down. I hate it. It is interfering with my life. I tell my mom all my struggles when I talk to her and she thinks that I am depressed and that is why I am making up health issues. I battle with IBS-C most the time. Lately my back hurts, I feel so exhausted sometimes, I feel slowed down, cold all the time, keep getting sick all the time, struggle with heartburn and continue to lose weight.

I too have had a very stressful year. My husband is a medical resident that studies all the time, I have three boys and homeschool the six year old. My youngest has something called NF1 and he has celiac disease. He is also underweight and very short. He and I both got diagnosed with celiac this year, we are trying to sell our house and we are moving for just a year. My oldest son had something called sagittal craniosynostosis and had to have surgery on his head three times, from the time he was 5 months to 3 years old. This diet has not been easy on me at all since I am vegetarian and still struggling with the IBS and not knowing what I can eat. I have also had every "bug" known to man the past six months.

Anyway, sometimes I am more optimistic and seem generally happy. THen I am depressed and distant to my kids and don't feel like being a stay at home mom anymore. It is SO challenging being here all day without adult stimulation. I never get a break much from the kids.

Ok, thanks for listening to my pitty party. No, I just don't understand why I can be SO up and down. All of which seems to be related to my health. If the IBS is ok, then I am ok. If I don't have the flu or something, then I am happier. I don't really know what the best idea for me is. I think I need to start working again part time and get out more. I do exercise everyday, but my husband is out of town this whole week, so it won't be happening this week. That is the only thing that keeps me half way sane. I just want to be here for my kids and be happy to be with them. Half the time, I feel like I am just going through life just getting by and I have no excitement when I am with them. I know it isn't fair to them. It isn't that I am mean to them at all, but just feel sort of dead inside. Sort of an unreal feeling and sometimes I feel like I am not even answering them when they are asking me or telling me a story for the hundredth time in an hour.

All of this started when I was under a TON of stress from my youngest son about a year ago, which had been going on for a year.

Lollie, let me know what you decide to do. I am sorry your dad died. I know I will be completely devastated when something happens to my parents. THey are my world, along with my husband and kids. It sounds like you have alot of stress though and would be good to come up with some ways to eliminate some of it(I know it is easier said then done). For me, I have become more withdrawn from friends and stuff. Do you have a church? Are you able to exercise at all? SOrry I am not more help.

Monica

[Lollie]

Monica,

Thanks. It's so nice to know that some one cares! I have two little girls, 3 and 5. I was home schooling until dad died and then I just couldn't focus on it at all. I didn't want my daughter, who is very bright and alert and attentive, to get caught up with my sadness. So I found a really good private school in my area, and it's only half day. It makes me feel good that she is going some where that is fun and very stimulating. But I miss all of our time together. But that's a whole other topic.....

I do have a church that I attend and my husband is a minister (part time). I was very active prior to my dad, but after, again, I just couldn't focus and lost interest in all the things I had been doing to help others. I also got some hurt feelings from the congregation, because when I stopped going, noone seemed to care at all. Our visitation program is obviously lacking, and I intend to get involved in that when I feel more together.

I have no doubt that my "depression" is coming from the death of my dad. I and my mother nursed him by ourselves. I put my entire life on hold for that year, and I'm very glad I did. That's a year of my dad I can never replace. But in saying that, I guess I'm having a hard time getting back into the swing of my life. I'm an artist and I do shows. I have to travel for the shows. I love doing them, but they are stressful when getting ready for them. But in the art world, there aren't many ways to earn a living. Albeit, part time, and out of my home. (my sudio is in my house so I can still be the girls)

I wanted to tell you I totally understand where you are coming from about not having other adults. I sometimes feel like I'm a captive. I love my daughters more then anything in the whole world, but I feel like I'm doing them an injustice on days when I'm feeling less then cheery. But I do try.

I don't want to take any drugs. That's why I haven't been to see the doc yet. I just got of prolsec/nexium and a med for IBS. I didn't realize the side effects...... So I'm a bit leary of trying any other drugs. I'm hoping that in time I'll get better. I also hope that now that my bulbs are blooming, I'm in Texas and Spring has definantly started, I will feel better as the weather is better and all the plants go to green.

I'm sorry this is so long, but I think it actually helped to get it all out!

Lollie

[key]

Lollie,

I am with you on the whole SPring thing! I get this way almost every winter and can't stand being cooped up. I should live at the beach I think. Anyway, hopefully that will help both of us. I don't like drugs because of the side effects. It is very frustrating. I am just hoping that the IBS gets better and that I can gain five pounds. I think my one problem might be lack of protein. It is hard to say. THe other major problem like I said is that I am with my kids all the time. I of course have chosen this route to homeschool. He is doing awesome, but some days I feel as if I am sad alot. I should have joined a homeschool support group, but we were moving after this year and I felt it was just one year and I would be fine. LIttle did I know!

I know what you are saying about church congregations. It is hard when you get so down that you aren't as active and no one seems to care or notice what you are going through. OUr church really lacks this too. I currently have a friend that isn't really coming to our church anymore after the loss of her parents. I think she was upset that not very many people were a support to her. I did try.

You will get less sad as time goes on. It is still very fresh and I am sure the first year is the hardest. I am not saying that it will ever be completely healed, but I think time is the only healer when it comes to loss.

It is terrible when you are down and too down to get involved with other people. It just makes the situation worse. I dont' know about you, but I find my kids getting sick and then I get so frustrated with that. Take the kids out and then they are sick and then we are stuck at home again! THat is the worst part of winter with kids.

I will keep you in my prayers! Email me anytime you are feeling down. We can talk about our kids!

Hugs!

Monica

[sillyyak]

Oh yes I can relate. I was diagnosed last November and can tell you that it has been HARD. Lots of major

external stressors as well. Mostly I have found it difficult to cope with the stress of a major lifestyle change and not being able to pick up a slice of pizza when I want to. It is depressing. I was put on antidepressants and antianxiety and I have found that it has helped. Food has become such a central part of my life now, in ways that it was not before. And it makes me feel as if I am being controlled. And, for a type A very independent person this has been one of the more challenging aspects of the diagnosis and diet. I am grateful though that I do not have to take a plethora of medications for this illness. I would seriously be screwed then because I do not have good insurance (no prescription coverage) and would end up having a lot of out of pocket costs.

You are not alone.

[Mikey]

Hi there, new to the forum, and just wanted to reply to this post. I have celiac, but it isn't gluten that normally gives me other problems such as depression or angry outbursts. It is chemical exposures that cause those problems. For example, exposure to spray cleaning chemicals in the home will make me feel weak, my joints sore, and have fits of anger and depression. Getting all of the chemicals out of your home may help you. Just a suggestion from my own experience.

[cassie]

Hi everyone--Before I jump in here, I want to say how much I feel for and admire all of you who are dealing with such tremendous life changes and stressors that would be tough for anyone--and then to have to change the very way you feed yourself so abruptly. Please hang in there day to day and keep in the community here.

I am new to this, too (both celiac and the forum). I had an interesting transition, though. Several weeks ago the blood tests came back (tTG 97) and I started gluten-free immediately. I did a lot of research fast and managed to avoid gluten, but I was shell-shocked because I pretty much lived on bread. I felt better for a couple of days and then it was worse than before, which is horrible because you're doing everything right. Being blindsided and feeling physically terrible is a potent combination for rage and despair.

Then I scheduled my upper endoscopy and was told that I had to go back on gluten for a week. I decided that since I was already feeling bad, I would go on a bagel diet for TWO weeks and make myself sick of them (fat chance) and also leave no room for doubt with the biopsy. Interestingly, for a few days I felt the same--gluten didn't seem to be problematic. I started telling myself that the blood test was a fluke and the exam would show horrific bacterial overgrowth that could be treated with antibiotics--but no celiac.

Endoscopy was performed about a week and a half ago. Although my GI doc said it would be a couple of weeks for the biopsy results (still awaiting as of right now), he showed me visible damage, like little teeth marks, on the photographs of my gut, and said that a celiac dx was pretty much a sure thing. He said I would probably start feeling better within four to six weeks. If that's true, then I guess the increased gas, bloating, etc. I'm getting right now (gluten-free) is part of the process of how the damaged gut starts healing and reabsorbing nutrients. It doesn't feel better, but seems to make sense. Do any of you have similar experience? Also, I guess I had the "first round" to get the gluten-free shock over with and figure out what other foods I could and could not tolerate temporarily with this raw gut. It was awful during the first round to try vegetables, fruits, corn, and potatoes, and swell up like a balloon--"Will I ever be able to eat anything but rice?" was a frequent hysterical thought.

As far as the flu-like symptoms: I used to never, ever get even a cold, but all this week I have had some kind of epizooti. I have read that celiac-induced chronic malabsorption and malnutrition lowers immunity and makes you susceptible to things--but again, hopefully this is a stage of the healing process.

Finally, I also found out that one of my thyroid levels was low--not the TSH or free T4 (both within normal), but the T3, which is the active form the body uses (converted from T4). I have been cold all my life, but have gotten increasingly fatigued over the last couple of months, with total amenorreah even though I am only 44. (I thought there might be hormonal issues, which led me to an endocrinologist, who ordered the blood work that uncovered celiac, low thyroid, low estrogen, and low Vit. D. I'm now on a very low dose of Armour thyroid to correct the deficiency. I'm raising this issue because it would be worth having your thyroid levels/function checked to see if you are hypothyroid, which apparently is another grossly overlooked condition that can be treated with simple medication--and from reading some other posts in this forum, may be only temporary because of the celiac disease complications.

I'm sorry if this has been way too long--I had just read the entire string and noticed several different yet related points. I am certainly not offering anything other than my own limited experience, guesswork, and research, and I hope that others of you will please give me guidance and advice based on your experience and knowledge. I am a baby celiac and I think I'd scream if I did not have a magnificent husband who manages to let me know that he takes this very, very seriously AND that it's all going to be okay--and that he'll be there every step of the way. Helps to keep things in balance and perspective. The diet will be okay, eventually--it's the uncertainty of what the healing process is supposed to entail that is trying, at least for me.

Good luck to everyone.

Cassie

[key]

Cassie,

Welcome here! THanks for your story and idea about the thyroid. I have just about every symptom of a thyroid problem, dry hair, cold intolerance, depression(on and off), but don't fit the picture because I am underweight not overweight. I have had it checked at least 3 times just this year by different doctors, but it is fine. I really think my problem is malnutrition from being gluttened SO many times. I am just chronically not getting better, but hope that I will improve now that I have made some changes. Actually I felt great for the first 4 months gluten free, so I think I became more sensitive to small amounts of gluten as time went on.

It is great you have a supportive husband. My husband is also my biggest support for sure! He is awesome and just like your's he tells me it will all get better. HE is awesome about eating whatever too and we don't get to go out to dinner much, but he doesn't care. He says there is always PF Chang's and we do like going there.

Take Care,

Monica

[jackals01]

I have recently been told I am intolerant to Gluten AND Dairy and am still getting over the shock of saying goodbye to "great tasting" bread and hello to reading EVERY single label I put in my shopping trolley.

I got my bloods back yesterday and was told some pretty disturbing results - I was wondering if anyone else has had results like this and if so how did you get everything under control.

My insulin resistance levels were way up - 112! (normal for my age (23) is 20) and I have an underactive thyroid which explain why I haven't lost any weight (I was on an Anti-candida diet as well)

My Dr (who is fantastic!) told me that the insulin levels aren't too worrying at the moment as it is most likely related to my intolerances and possibly glandular fever - which has flared up again.

If anyone has got any good books that really helps understand gluten/dairy/thyroid etc can you please let me know - I've read alot of posts and you guys are a wealth of knowledge! I also work in a bookshop in NZ and would love to get some books in to help out other allergy sufferers.

[cassie]

Hi--

Lucky you! I also have a fantastic doctor (several, actually), and I want to respond to the thyroid connection again. I am thin, too, so the possibility that I was hypothyroid was rejected out of hand for years by other doctors. I did get tested for TSH, free T4, and free T3 a couple of times over the last six months and could see a continual drop in the free T3. I recently asked one of my practitioners (NP connected with a doctor at an integrated practice) about the thyroid and pointed out the numbers. She put me on a low dose of Armour (because I am small and thin) with no problem, and said that even if the numbers all looked fine, their practice often tried patients on thyroid medication if the symptoms warranted it. So, if gluten-free doesn't solve everything, you may want to find a doctor who will work with you on this.

Re the dairy intolerance: I have seen in many places (including the excellent articles and resources available on this website) that temporary lactose intolerance is extremely common in celiacs--something about the cells involved being located right on the tips of the intestinal villi, which are damaged but regenerate fairly soon. Is your lactose intolerance something you already had, unrelated to celiac disease?

I have admittedly not read everything out there, but here are some books I found helpful.

Celiac-related:The Gluten-Free Bible by Jax Peters Lowell (2005, I think) (in my opinion a really cool update of her 1995 Against the Grain).

Thyroid-related: Living Well with Hypothyroidism by Mary Shomon, a patient advocate who also hosts a site on About.com (do a thyroid search) and has a great website (www.thyroid-info.com). Incidentally, this site features a patient-nominated listing of "best thyroid docs" in various states and cities.

Allergies/Intolerances-related: this is tricky. In my opinion, many of the resources are either too stoutly doctrinaire and patronizing, or make you want to barricade yourself in the house forever so you don't accidentally look at a potential allergen and suffer unimaginable torture. One book that seemed to strike a good balance is Food allergies : the complete guide to understanding and relieving your food allergies (2000) by William E. Walsh MD. He is a Fellow of the American College of Allergy and suffers from food sensitivities himself. I enjoyed his "country doctor" style and and wanted to invite him over for a cup of tea.

Cassie

[CMCM]

My money is that you are experiencing perimenopause. I got the book 'What your doctor may not tell you about premenopause (starts even before perimenopause). I'm only 42 and this book changed my life. Got it for $2 plus frt. (less than $6) on amazon .com. It offers natural remedies instead of rx meds and my doctor even encouraged me to follow the books advice before started Lexapro. I use St. John's Wort in addition to the books suggestions and I'm like a different person. My symptoms started before the diet since I wasn't dx'd at the time. Oh the author is John Lee. He was a pioneer on the subject and he also wrote a follow up relating to actual menopause and that will be the next one I'll get. Hopefully that's still a few years away for me. I was on the natural therapies for appox. three months before I went off gluten. The only changes for me post gluten-free were positive and I've never felt better as an adult. Good luck!

p.s. as usual most docs are behind on anything to do with menopause so do your own research as most docs won't do anything but give you durgs you may not need instead of cheaper, better for you body therapies like natural progesterone cream, normal vitamins and Evening Primose Oil - even says gluten free on the box!.

OH...I cannot recommend highly enough John Lee's book....it absolutely changed everything for me...for the better. I wish I'd discovered it long before I did.....I had what I now know were my worst perimenopause stuff going on in my early to mid 40's....then at about 48 I found the Lee book and really changed my diet (especially cutting out most sugar, limiting grains (at that time I didn't know I had celiac), eating more fruits and veggies, and starting a regular exercise program. The result of these changes was that when I actually went into menopause it was a big fat NOTHING....no flashes, no nothing, I felt great. This whole experience taught me a lot about the effect of diet and regular exercise on your body. Although every gynecologist I ever saw tried to give me hormone replacement pills, I always refused and with the recent negative evidence about it, John Lee was right and I'm so glad I never took it. I didn't need it because of the positive lifestyle approach I took. I recommend his book to EVERYONE!!

[jackals01]

Thanks for the info Cassie - the reading should keep me busy for a little while.

My Dr is a NP and some of the tests I have had have been on a BiComm machine, which we are working through to balance my numbers and work through everything one by one, which should as we go fix up other problems and blockages in my system.

So hopefully in a few months my thyroid, liver and insulin resistance levels should be heading back in the right direction and the weight that I expected to come off will slowly come off.

As for my Dairy Intolerance I think I've had it before the Gluten - I noticed the dairy first and didn't pick the gluten until the dr told me - but they still could be inter-related - well heres hoping cos my Dr says she can (in time) desensitise me to gluten and dairy... Fingers Crossed!