Really Need A Supoort System

[bigapplekathleen]

Hi everyone,

It's been a long time since I have posted here. I am so frustrated right now with this illness.

Let me give some backgroud - I have been sick on and off for the past 20 years. I am now 37. This has included constant stomach and intestinal issues, chronic infections (antibiotics 12-15 times a year!), skin rashes, allergies to medicines and foods, pain, 3 whiplash injures, fibrocystic breast lumps, ovarian cysts, ovarian 'failure', repeat staph infections (including one that almost killed me in 2001), repeated parasite infections, etc.

I was finally diagnosed with celiac disease in August 2003 (with some blood tests and no biopsy). I responded favorably to the gluten-free diet. However, trying to adhere to the diet and dealing with the emotional fallout put a huge strain on my new marriage (and it didn't survive) and on my business relationships. I realize now that I was wrong to even attempt to go out to dinner with people; it's too much to explain. After I started the gluten-free diet, I lost about 15 pounds immediately and then leveled off and started to gain again when I saw a nutritionist who put me back on gluten-free grains like amaranth and quinoa. My symptoms re-appeared and other health problems crept into the forefront. (cysts, neuropathy, infections) A biopsy in Dec. 2004 showed no villi atrophy. I had my doc run the genetic tests for celiac disease and they came back negative. (He is one of the top celiac docs, and still believes that I have celiac despite not having the gene.) I lost about 45 pounds by the time I tried a gluten challenge in the Spring of 2005, but didn't even make it through to get the biopsy. IT was a BIG MISTAKE! I got so sick. I was on antibiotics within 3 days with a very severe infection. I passed out twice after eating wheat products, and generally felt really tired and ill. PLus, I gained 15 pounds back.

So, where am i today? I am trying to recover from a whiplash injury last August. I have chronic pain and tiredness. I was just diagnosed with fibromyalgia, but simply because my symptoms cannot be explained any other way. I have elevated C-reactive protein levels, which shows chronic inflammation in my body. A skin biopsy confirmed the inflammatory condition, but no doctors could explain or treat it.

This is wreaking EXTREME havoc on my personal life and is destroying the relationship that I am now in. My health issues are way too much for him to handle. (too much baggage). The fact that I don't have the gene for celiac in some ways makes it worse, because everytime I complain about having celiac, he reminds me that I don't ACTUALLY have celiac.

I am finally under the care of a naturopathic physician and have lost 7 pounds in the past 9 days and am starting the regain strength and energy. I am taking supplements and am on a strict diet. But I am frustrated by how alone I feel with the multiple health problems I am confronting. I just want them all to go away. I am also angry at myself for agreeing to that gluten challenge last spring, since I know that set me back into a pattern of ill health long after I stopped the challenge. I really wish there were face-to-face support groups where I could talk openly with those who have been through this jungle. After 20 years of ill health, I don't expect it to get better overnight, but clearly, even the celiac expert doctors aren't able to do much, other than check you for other complications. (Emotionally, I was in a much better shape before I was diagnosed with all this stuff...)

I am now on a very strict diet that seems to be helping. I am avoiding all dairy, all beans, all processed foods and refined grains. I am also avoiding any gluten-free grains that could possibly be cross-contaminated. So, I am sticking mostly to meat, fish, poulty, veggies and fruit. I feel a lot better but really wish I could have a gluten-free cookie or a piece of gluten-free bread.

I know I am just ranting, but am feeling so alone in this stupid disease. At least the naturopath is willing to look at the causes of all of these problems and then go from there. He is also convinced that I am gluten-intolerant, but thinks I was unknowingly ingesting gluten on the gluten-free diet (in processed foods and places like McDonalds, etc). He also thinks my thyroid if off and my estrogen levels need to be checked. So, I know that I am on my way 'up' - so to speak - but still feel frustrated at the disease.

Thanks for listening

k

[dlp252]

Wow, what a journey you've had. You are definitely not alone here that's for sure.

Regarding the comment about you NOT actually having Celiac. If you had positive blood tests that confirms you have Celiac! The biopsy was done after you had been gluten free for some time it is unlikely that even if you had been consumming gluten for a few days or even weeks before the biopsy that it would have caught any damage as the damage would have been sporatic at best. In addition to all that, Celiac is a piece of the condition Gluten Intolerance. Gluten Intolerance is is just as serious as Celiac, so it really doesn't matter what it's called (or it shouldn't in my opinion).

Anyway, I'm sorry you've had such a rough time!

[Judyin Philly]

Welcome Kathleen

Please see my pm to you.

judy in philly

[jerseyangel]

Hi Kathleen and welcome! This is a great place for info and support. Wow, you have had to go through so much--I'm so sorry. Hopefully, you are encouraged by the progress you are making lately. The Naturopath sounds like he 'gets it' and is guiding you in the right direction. I know that it is so hurtful when those closest to us for some reason don't or don't want to understand. Sometimes, when all is settled, you can look back and think that you were better off without such people in your life--and find that the changes were actually for the better. I know that's hard to think about now, but I just know things will get better. I can relate to the strictness of the diet you are on now--I have found that I do not do well at all on any grains, eggs, soy, corn or dairy. That pretty much leaves meat, veggies, fruit and nuts. I was sick for 20 years before I was finally diagnosed at age 49. I had my share of people who thought it was all in my head--some, despite everything, still do. That's a hard one. Also, if you were diagnosed through positive blood work, you are Celiac--that gluten challenge, in my opinion was not necessary. It's a shame that it put you back so far in your recovery. Come here anytime to rant--everyone here understands, you don't have to feel so alone.

[Guest cassidy]

You really have been through a lot.

At least you are following the diet and are on the road to recovery.

I don't think it matters that you don't have the gene. I have read that they have identified some genes, but there may be more. You might have one of the ones they haven't identified yet. My blood test was negative, but I know that I can't eat gluten. I don't really care why.

If the person you are in a relationship with doesn't want to be supportive of your condition, then that is a problem. If this person is otherwise supportive, then maybe some education on celiac would be helpful. If this person isn't supportive of you in general, then that is a different problem all together. My husband has never been sick a day in his life and it is hard for him to understand.

There are lots of support groups. You can post under meeting room (I think that is the name) and see if there are other people in your area. You can also google "celiac support groups" with your city's name and it should come up.

As you know, it will take time and you will have ups and downs, but hopefully you are on your way up. I hope things get better for you. People on this board will listen and I hope that will help you. Good luck.

[Jen H]

Hi Kathleen,

I am sorry to hear you haven't been feeling well. I can sympathize with how you're feeling on a much smaller scale. This is a great place to gain advice and reassurance.

Have you checked into support groups in your area? There may be people in the group who have had a simliar journey. You may find someone there you connect with and can confide in.

I was a mess when I was first diagnosed with celiac. It was my first year of marriage, I was finishing up my degree, and I had to give up my job because of my health. My husband and I went to therapy together and I think it helped us both understand my feelings of inadequacy and it was a place to vent. I'm not sure if you like to read, but the therapist recommended a book for me. It's called "Full Catastrophe Living: Using the Wisdom of Your Body and Mind to Face Stress, Pain, and Illness, but Jon Kabat-Zinn.. I started it and it's been helpful so far.

I hope you're feeling better soon.

[Guest Robbin]

Kathleen, Welcome. You have had a rough ride, but now it will get better, I know. You are on the right track and we are all here to support each other. I have had similar ups and downs (including a divorce from an unsympathetic unsupportive man) This illness wrecks havoc on so many of our lives. You know how you respond to being gluten-free, don't let a dr. or ANYONE tell you how you should feel. I have fibromyalgia, fibrocystic breast disease, ovarian cysts and endometriosis--I firmly believe they were all caused by my body reacting to the gluten all these years. After being gluten-free just shy of 2 months, I have noticed the difference in a big way. I have a major reduction in breast lumps and the painful lumps on my legs and arms have "melted" to half the size. It is grueling, but you can do it. You have this forum for support now and you have reached that point that we all reach when we have to say "enough already" . Time to live and get healthy. I admire your courage through all your problems. God bless and keep us posted. You are not alone.

[tiredofdoctors]

Hi Kathleen --welcome. Please know that from my experience on this forum, you're definitely not alone. These people have been a wealth of information and consolance when I need it the most. I'm sorry you've had such a terrible time. It will get better, and just keep the faith. (((hugs))) Lynne

[Guest nini]

Welcome and I too am sorry you've had such a rough road, you are not alone and you are among friends here.

I agree with the others, you had a positive blood test, therefore YOU HAVE CELIAC... the biopsy can NEVER EVER completely rule it out and the Dr.s that are refusing to diagnose based on that outdated and dangerous methodology, need a swift kick in the pants. Stick to your guns sister, I'm sorry that people in your life are not being supportive. My hubby has his moments but for the most part he is really supportive and no longer doubts my dx. When I first went gluten-free over 6 years ago he thought I was crazy, and after my Dr. said it was all in my head and bad for my pregnancy I went back to eating gluten and very nearly died. I was only dx'ed by a blood test. I did not and will not ever have a biopsy. My GI Dr. said that the blood test was so highly positive that there was no room for doubt and then when I responded so positively to the gluten-free diet, he declared Celiac... so, you have positive blood work, YOU HAVE CELIAC. I cannot stress this enough. They do not have all the genes figured out for Celiac yet... far from it.

I wish I could give you a big ol hug and reassure you that it will be ok... everything has it's reason for happening, I believe this.

[shellbean]

Hi Kathleen, I want to offer you my support too. I just diagnosed myself by means of the gluten free diet. All of my doctors couldn't figure out what was wrong with me etc etc so I did it myself. And the diet has really helped me. I am very blessed to have a wonderful man in my life that completely understands what I am going through and is very supportive and helpful to me during all of this. I have been on the rollar coaster of emotions too so I know how that is! I had to quit my job and I lost friends because they can't understand why I can't go out to eat with them. But you know what? Those are "friends" I don't need. After I found this message board, I realized I am definitely not alone. I feel like I have more friends out there that I have never met or even talked to. It is such a nice feeling to know there are so many people out there that we can talk to that know what we're going through. The support and advice they all give has REALLY helped me tremendously emotionally. I wish you all the best and I hope my little note helps in some way.

[CMCM]

Celiac, schmeeliac, I don't know why it has to have a label to be valid. It looks to me like there is this BIG thing called gluten sensitivity....with a whole range of symptoms....and some people on the gluten sensitivity spectrum get additional damage to their whole system and IF this happens to get diagnosed to the satisfaction of our brilliant medical community, then they crown you with the designation of "celiac." Big Wow. The fact is, if you are gluten sensitive, you can feel sick, your system can be a mess, and you can get your own type of intestinal damage even if it isn't "officially" celiac disease.

We go around and around, but the fact is, if you feel sick from eating gluten the message is very very very very clear: get the gluten out of your diet.

Also...don't believe that some doctor has to tell you that you have celiac disease to validate what you feel. And the gene thing can be misleading, too....not all the genes have been discovered. The only definite thing is how you feel...on and off gluten....and that tells you a lot.

This gluten thing is a big old can of worms, in my opinion. A lot of us (maybe most of us) have multiple sensitivities, and that can be a big bummer. I know I keep chipping away at my diet trying to figure out exactly what it is I can actually eat and feel good with. Getting the gluten and dairy out was big, but my gosh, there's lots of other stuff for me. Like sugar and starches. Right now at least, my system does not like sugar, starches (including potatoes ), beans, rice. I am really back at a very limited and simple diet and this can really get you down, believe me. But we can all get thru our various issues....it's just the beginning that's so hard.

[Canadian Karen]

The next time your "significant other" says you can't have celiac because you don't have the gene, show him this article:

https://www.celiac.com/st_prod.html?p_prodi...-35106451986.cb

Clearly, 60% of cases are due to genes that are not yet identified....... So much is still unknown about this disease and to make a sweeping remark like that is just ignorant.

Hugs! and welcome!

Karen

[bigapplekathleen]

HI Karen and everyone,

Thanks for the support.

Actually, it is my DOCTOR and others around me who say 'you don't have celiac', and my doc is one of the top in the world. I started crying the last time I was in his office, and he looked at me totally stone-cold and asked if I was depressed. I told him I am just sick of being sick and I want an answer. His answer was to try to push anti-depressants on me. (not depressed, not interested). I was at his office three days later for an h-pylori breath test and he came in to talk to me. I told him how off-base he was. I have a scheduled follow-up exam with him in April and I am not sure I will go. I think it's a bunch of baloney. He is eager to diagnose this and that, but can't help with any of it. (and this is someone famous in the field of celiac.)

Anyway, I am sticking with the naturopath. I have been on this very strict diet for 10 days now. I feel more hungry than I have ever felt, but I am eating really well, so it doesn't bother me. I have lost about 7 pounds already (of the 15 I gained on that stupid gluten challenge). Here's what's interesting: a lot of my 'fibromyalgia' symptoms have subsided already: My muscles aren't as sore, I am sleeping better, and I have way more energy. My intestines have also calmed down (except when I attempted to eat corn and chocolate).

The naturopath told me that he thinks my gluten sensitivity started when I was a child. I took antibioitics a lot (10 or more times per year). That changed my intestinal tract (beneficial bacteria changed & it created permeability). My first episode of being very sick was when I was 16. I lost 35 pounds in a month, couldn't keep anything down, had horrible diarrhea, (Celiac symptoms, right?). No one knew what it was. It eventually subsided and I gained back the weight and life went on to several more bouts similar to the first, but increasingly worse, and with constant pains and tiredness and stomach troubles.

So, it's interesting to see how over-use of antibioitics could have contributed to the onset of this intolerance. It makes a pretty good case for encouraging the use of probiotics, as well.

Thanks, everyone, for being here. I am going to call the local support groups and ask if they have a member who can help.

k

[teankerbell]

  Canadian Karen said:

The next time your "significant other" says you can't have celiac because you don't have the gene, show him this article:

https://www.celiac.com/st_prod.html?p_prodi...-35106451986.cb

Clearly, 60% of cases are due to genes that are not yet identified....... So much is still unknown about this disease and to make a sweeping remark like that is just ignorant.

Hugs! and welcome!

Karen

I agree with Karen: Your Significant Other needs to be educated!

Welcome and hope you feel better soon!

[Judyin Philly]

  bigapplekathleen said:

1.Here's what's interesting: a lot of my 'fibromyalgia' symptoms have subsided already: My muscles aren't as sore, I am sleeping better, and I have way more energy. My intestines have also calmed down

2. I took antibioitics a lot (10 or more times per year). That changed my intestinal tract (beneficial bacteria changed & it created permeability). constant pains and tiredness and stomach troubles.

3.So, it's interesting to see how over-use of antibioitics could have contributed to the onset of this intolerance. It makes a pretty good case for encouraging the use of probiotics, as well.

Dear Karen

I hope you got my PM and then copied my PM into your email last nite.

Just wanted to tell you that I agree with 1,2,3 above and the same is true for me.

I started with the antibiotics about 15 years ago with constant UTI's and they have improved so much since i stopped taking all antibiotics about a year ago except for cipro in Sept which sent me to the hospital..UTI with 103.9 fever...no choice there.

Hang in there, your getting some great advice and support here and it will continue

Judy in Philly

[gabby]

Maybe this is a way of looking at things that might help.

My oldest sister is 48, and for the past five years, she can't eat garlic. If she so much as eats a whiff of garlic, she immediately gets a bloated stomach, terrible cramps, a bad headache, and then the D starts. She looks and feels horrible for a good 24-36 hours. She is not allergic to garlic, and has no other health problems. No doctor has diagnosed her with a garlic sensitivity. There are no blood tests, genetic tests or biopsies to be performed. But she is vigilant in reading labels and asking waiters about garlic content. She will do anything to avoid garlic.

What's funny, is that nobody questions her at meal times. Nobody tries to get her to eat just a bit of garlic, or thinks that she's making it up. Lots of people have extreme food sensitivities and go out of their way to not eat these foods. And they mourn the loss of their favourites. My sister mourns not being able to eat pizza, garlic bread, most pasta sauces, most meat sauces, chinese food, indian food, and tons of other wonderfully tasty, yet garlic-laced ethnic foods. And eating out at restaurants is a nightmare because they put garlic into just about everything...including brushed onto steaks in the garlic-butter marinade which also contaminates the entire grill.

Even if the most brilliant nutritionist/doctor/gastroenterologist/geneticist told my sister that she does NOT have a garlic problem....you still wouldn't be able to make her eat it. The pain and suffering is too much. "That piece of garlic bread or pizza might look tempting at the time, but trust me, it is never worth it," she says.

Notice that nowhere in the above story did I say that avoiding these foods is EASY. It isn't easy. It'll never be easy. But it is do-able. And with a great support system (like the dear-hearts on this board!) it is manageable.

A great place to start is this: whenever you are mourning the loss of a particular food, get on this board and post a message telling us you are missing a particular food, and can anyone suggest a replacement (either as a prepared product or a homemade recipe).

We are lucky in one way. There are no garlic-free support groups out there. But there's lots of support for those going gluten-free.

You are in very good company!

[jaten]

  bigapplekathleen said:

Actually, it is my DOCTOR and others around me who say 'you don't have celiac', and my doc is one of the top in the world.

k

Hi Kathleen,

Welcome! You're definitely in the right place for understanding and friendly support! If you re-read your first post you'll see why the confusion on what your doctor did/didn't diagnose. That said, gluten-sensitivity comes in many forms and with an amazing array of symptoms. Most on this board can sympathize with prolonged maladies long before gluten was targeted as the culprit. All on this board will attest to the certainty that their bodies are much healthier/better feeling sans gluten.

I've learned a lot from this board about what to eat and what to avoid eating to make my Celiac-diagnosed body feel better. A fair portion of this advice has come from people who have said they don't have a "medical diagnosis." In other words, gluten-sensitivity is a reality for a lot of non-Celiacs. Most of these people have been so right on target with their suggestions they have to be feeling the same things that my atrophied villi feel.

Who cares whether your medical chart is stamped "Sprue" (my GI uses this term over Celiac). NO ONE other than you understands what makes your body (physically, mentally, emotionally) feel good or bad. Not to over-simplify, but rather than engaging in a Celiac/Not-Celiac debate with people who don't get it anyway, could you just say, "I feel best when I completely avoid wheat." Nuff said. Who can argue with what makes you feel better, and who can argue when obviously you're wanting to be your "best"?

Again, welcome. Best of luck to you!

[Lollie]

Hi! Sorry you have had such a bad time! I relate, just as everyone else has already said. I have been gluten-free for only a short period, but after 10 years of illness, these last few months have been an answered prayer. I don't know what I would do without my husband (he Dx me correctly, not a doc). I think if your BF had a better education as to what your dealing with, maybe he would come around. But, as advice I have goteen here about how to deal with my family, maybe you should only share positive experiences with him. Let him know when your feeling great because of gluten-free, share something you've made that is delicious, ect....Then come to us with the rest. Those who have not gone through what we have will never really understand. That's why your in luck, we all understand.

I hope this helps a little. Hang in there, it will get better!

Lollie

[Rusla]

I can attest to the pain not being worth it. I was on holidays and everyone was having the red snapper in mushroom sauce or all the Jamaican chocolate rum cake or other pastries. I opted for their delicious gluten/diary-free coconut and mango ice cream. I think I got the better deal and no pain. The one time I got accidently gluten with a minute bit and I was very sick.

[bigapplekathleen]

HI everyone,

Thanks again for being here. I just want to say how much better I feel after 2 weeks virtually grain-free and dairy-free. I have discovered a couple of things: I get really sick if I ingest corn. I also had a reaction the one time I ate dairy. However, my naturopath pointed out that it could be the SUGAR, or the dairy FAT, or the dairy protein, so we are trying a couple of other things to see which it might be. I hate to eliminate all dairy if it's just the fat. (At least I could use ghee...) I lost 7 pounds in about 10 days of eating no grains. A lot of aches have stopped and I have a TON more energy. I am sleeping better, too. But the times I strayed and ate grains, wow, did I feel it. I woke up the next morning and was sneezing my head off. Plus I had horrible intestinal pains.

I am hoping to get to a support group meeting this weekend, too. I feel like I need to connect in person with others who 'get it'.

Thanks again !

k

[jerseyangel]

Kathleen--Great to hear you're making such wonderful progress! Amazing what can happen when you get rid of the gluten. Enjoy the support group meeting--keep us posted on how you're doing

[sspitzer5]

  bigapplekathleen said:

trying to adhere to the diet and dealing with the emotional fallout put a huge strain on my new marriage (and it didn't survive) and on my business relationships. I realize now that I was wrong to even attempt to go out to dinner with people; it's too much to explain.

Hi K,

I definitely understand how you feel. I'm glad you found this board and the support it offers. I wanted to add one thing which is that I frequently go out to dinner with clients and I find that they are typically very supportive. I have a little dining card that explains everything and I give it to the waiter/manager. When I tell clients that I can't eat wheat, etc., they usually ask me questions about it and then we move on to other topics. It hasn't been an issue at all (other than the usual cross contam worries). In fact, sometimes it makes the relationship between all of you a little more "human", as opposed to just business.

S

[bigapplekathleen]

Thanks for all the support. I am so angry this morning, though. My significant other and I had a huge fight again today, and once again, it goes back to my 'food issues'. He even insists that I don't get sick when I eat wheat. I said, what are you talking about? He said there have been mistakes. I aksed for specifics and he refused to give any. Honestly, my symptoms have been HORRIBLE since I moved in with him. however, the past 2 weeks, since I have been making all of my own food, I have been better. Am I crazy about this? Is he off base or am I ? Now I feel paranoid that he is going to cook me food with wheat just to prove a point (when in fact, my symptoms have been horrible...)

Really, we are fighting about everything these days, but the biggest issue is my celiac issues. I am wooried about the lack of support. He said that actually he is providing the highest level of support since the challenges he has made to me have forced me to seek alternate ways of feeling better, so he is saying that is more important than support in the way of "I care." I think it's nuts.

I am just shocked that he has done a 180 since I moved into his house. I never thought anyone could be so mean.

I don't know if I can go to the support group meeting. He is going ballistic about that, since it interferes with our 'family time' (he has 3 kids) and he is planning to clean up the yard on Sunday (and we all need to help).

I just feel like the whole thing has been twisted around. I know I need special dietary considerations. I know that my health has been horrible, but I would expect that he would be jumping for joy that I would reach out to others with the same condition.

thoughts?

k

[jerseyangel]

  bigapplekathleen said:

I am wooried about the lack of support. He said that actually he is providing the highest level of support since the challenges he has made to me have forced me to seek alternate ways of feeling better, so he is saying that is more important than support in the way of "I care." I think it's nuts.

I am just shocked that he has done a 180 since I moved into his house. I never thought anyone could be so mean.

I don't know if I can go to the support group meeting. He is going ballistic about that, since it interferes with our 'family time' (he has 3 kids) and he is planning to clean up the yard on Sunday (and we all need to help).

Kathleen--I don't know you or your guy, obviously, but sinced you asked, the idea that he feels he is giving you "support" by "forcing" you to find other causes of your health problems tells me just the opposite. He quite clearly wants nothing to do with dealing with a Celiac lifestyle. Probably, your moving in made it all the more clear what you need to do on a daily basis to be healthy. He wants it to just go away!

I'm sure that you've tried talking about this to him when you are both calm? I think before you go much further with him, you should lay all of the cards on the table and see just where you both stand on the whole thing. You need to be gluten-free--100%. Can he live with that? Is he going to resent it or you because of it? I know how painful this is for you, but it is better to move forward or not with a clear view of what the situation is.

If my husband could talk to him, he would find out that it is really no big deal. I made the necessary adjustments in the kitchen, tweaked the shopping list and cooking to accomodate my situation. I do all of the cooking, so it's easy. It dosn't affect my husband, really, much at all. (although he is extremely supportive of me) It's just a part of our life now. What concerns me is that he even seems to resent your going to a support group meeting.

I wish you the best with this. It's hard enough figuring out this gluten-free stuff in the beginning without having the lack of support. You deserve to be supported by your sig. other. Keep in touch

[penguin]

No offense, and as someone that doesn't know you or him, his version of "support" that you describe seems abusive. Personally, I have a very limited bulls*it tolerance, and I would have slapped him by now. It's a serious lifetime change, and you two need to evaluate, calmly, whether you can both deal with that. It's going to be rough for a while no matter which way you go.

Hang in there, and keep us posted We're here for you!