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Hi! I've Been Watching From Afar.....
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So, I don't usually do the forum thing. Since my diagnosis in April, I've used this forum to watch and find answers, but I think I'm to the point where I need to start talking to someone other than my sister (who is also celiac) and my husband. I'm so tired of being sick and tired and there are never any answers for either me or my sister. She's 27 and is more than likely infertile. She's on medicaid and can't find a good damned doctor. She's throwing up every morning. Every day I'm having aches and pains and want to just sleep constantly. I'm tired. I'm sick of being tired. I'm sick of being sick. We're 100% gluten free at my house because my husband is one of the greatest men alive. I am overzealous about being gluten-free. I only eat out when I have to travel for work, yet.... I'm constantly sick. I don't know what to do and I think I might cry right now writing this. I want to feel better. They TOLD me that I would feel better. I don't.

The. end. ;)

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Hello Bethanne,

I literally feel you and your sister's pain. I have had the disease since 2000 and it was hard getting through high school up to now and I am still struggling heavily. My case is severe and my doctor has even put me in a journal after they saw my intestines (they were strange to say the least) during my small intestinal resectioning three years ago.

Sadly I am still Gluten free as I have been for years and still have almost constant pain - nausea, throwing up, constipaption, migraines, joint pain/aches, recently suffered from seizures etc. you name it! Now my doctor wants to do another resectioning after a capsule study (as I did before and the capsule/camera and it became stuck because of my strictures etc. and emergency surgery) and I am willing to go forward but have reservations as my first surgery wasn't successful. I was supposed to actually swallow the casule today but decided to postpone as I have major questions for my doctor before going ahead. I just don't feel like I am in the right mental or physical state to probably in my case have surgery.

I am now 28 and cannot work an it is extremely difficult so I understand the struggles you both have. I also have lost all close friends who refused to understand and deal with a family that ignores my sensitvities. You are so blessed to have a husband that understands your needs and a have a sister to talk to. I think I would be so much better if I had someone to talk to - which is why I tried to check this site out again today and came across your post.

I suffer from much depression and have for years and the illness hasn't helped I'm sure. I am extreme about being gluten-free but it doesn't seem to do any good as it should...I don't even eat out anymore because I have and often land in the hospital so I just go without.

You and your sister are not alone and anytime you need someone to speak with, vent, ask questions, whatever - I am here. By the way, my name is Shawn (I'm female). Nice to "meet ya"!

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I'm so sorry you are both still sick. Since you have been reading here for a while, you probably know that once going gluten-free, a lot of other intolerances can surface. For me the worst one was corn. Soy is another biggie. Oats, nightshade vegetables (Potatoes, tomatoes, peppers, and eggplant) are often culprits for some folks. Have you tried doing a strict elimination diet? Start with as little as five safe foods - things like chicken or lamb, and some fruits and vegetables. Most people can tolerate rice, but some go completely grain-free at first.

There are some folks who can't tolerate things high in salicylates too. That means most fruits are out, and a lot of veggies too. Oh yeah, and some people can't tolerate legumes (peas, beans, and the like).

Pick five foods you think don't bother you and eat nothing but these foods for at least three months. See if you feel better. If you do, then you can start adding back one food at a time. Eat lots of that food (unless you get a reaction right away), and give yourself two weeks. Some people take that long to react. If there is no reaction, go back to a week of just your five foods, then add something else. It can take years to come up with a larger, more varied diet, but in the meantime, you should start feeling better.

There are some more knowledgable people here who will chime in and be able to add more advice. ((((HUGS)))) to you both.

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Bethanne,

I was exactly there until I finally tested soy-free for 2 full weeks instead of the previous 3-4 day elimination tests.

Around day 10 I started thinking I might really be onto something, and it ended up making a HUGE difference - I felt reawakened to enjoying life.

BUT . ...if I'd done just a 1 wk trial, I never would've known. (Well ok hopefully not 'never')

Still being that miserable despite the efforts of 100% gluten-free gets frustrating as hell, I know.

If I were you I'd try dairy-free, soy-free (maybe more-free) for at least 2 weeks, cuz really . .. .what've ya got to lose? A couple weeks' worth of cheese?

(Your sister too - gotta change something)

Shawn? Have you tried other-free?

There ARE ways for all 3 of you to get better. Hopefully the forum can help. :)

P.S. If anyone's thinking "I almost never have soy sauce", it's in a lot more processed foods than most people would guess.

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Hi Shawn. Nice to meet you too. Really. I feel so alone. There are no support coups out here in the northwest corner of NM. And thanks guys (Tom and barfull). I've thought about being tested for soy. I hate, hate, hate that it could be corn or dairy. I just got done eating a bowl of popcorn and a glass of milk. I know I'm either reacting to something or the damage was just that bad. I just had another endoscope and a colonoscopy to boot last week. I'd never been to a GI. My family Dr did my initial diagnosis and endoscopy. Recently, I went to him for the fatigue and he asked me "are you sure you're not just depressed". Sure, stupid, I'm going through a life altering disease, but this is more than depressed. My husband and I were irate. The GI said I was anemic again, that the damage was so bad that he asked if I 'cheated', then came back after path and said that I do show signs of healing. I still feel horrible. Maybe it's my knowledge that I'd have to give up yet another part of food as to why I haven't done an elimination. I told my hubby that I was gonna lay off dairy. Haven't done it yet. I did quit oats and as of late have laid off of potatoes.

Shawn, I'm so very sorry to hear your story. Truly sorry. I keep trying not to be depressed. I keep trying not to pity party, but I can't seem to come out of it. I haven't been in the hospital, but right now- maybe it's the mom in me, I'm terribly worried about my sister. I don't want to lose her over this. And I can see the hospital in her future if she doesn't get some answers. Me, I'll probably just get fired if I don't get this under control. ;)

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From my point of view, cut out dairy, corn and soy and see what happens. Corn and soy because so many of us have problems with them, and because of their being heavily GMO'd, and dairy because you can't digest it with damaged villi (if you are celiac -- sorry, didn't read back to check your diagnosis, it's late...)

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I suppose I just need to get on the ball and just get back on the wagon and try to figure it out. I've been so worried that my continued exhaustion is from some other autoimmune disease and not a reaction to another food.

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Hi Bethanne. Darling little one!

If you are still anemic, that saps energy. Take some B12 (sublingual if you can find it). That helps your body use the iron you are eating or taking. Have you had your thyroid tested lately?

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Oh and Shawn... you are more than welcome to "talk to me" anytime. I'm not an old pro at this, but I have a good ear and have had my share of insensitivity and stupidity.

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Ditching other foods might well be temporary. After healing you could very possibly get some if not all of them back. I had the most severe reactions to corn, and now although I can't do cornmeal, I can eat anything there is with cornstarch. That got me most medications back, it got me gluten-free bread back, gravy, all sorts of things.

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I just have to agree with the elimination diet. That is initially how I figured out that I was gluten intolerant. (Personally I believe it is celiac disease but I wouldn't put myself through the testing...and that is not to say being gluten intolerant is less serious than celiac)

Anyway, for me and my little girl, we had the same reaction to corn that we have to gluten...plus hives on top of all the gut and body pains. I know nobody wants to hear this, but it took a long time to feel better and a lot of food testing (at home...don't trust dr's tests anymore). Here's what we had to eliminate to feel better: corn, dairy, soy, all grains but rice, and legumes (me). And we MUST take vitamin B every day. I also take D3 and magnesium for joint and muscle pain. No processed foods...whole foods, organic non GMO whenever possible. Food is my drug. I spend a lot on it but I'd rather pay for it than medication.

Good luck to you (and your sister) and Shawn. I think a lot of people need to go much deeper than just eliminating gluten. I would just do the elimination diet and start getting some answers for yourself.

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Hi Bethanne,

Trying an elimination diet makes sense. They are often the only way to identify other food iniolerances. A very simple diet with a few foods in it is easier to understand and troubleshoot than a diet with a hundred or more ingredients. I think Bartful meant to say 3 weeks on the 5 foods, not 3 months. What you are looking for with the starting phase of 5 foods is improvement. If one or more of your 5 starting foods is an issue tho you may not improve in three weeks. So you need to be alert for that possibility and be willing to swap out your starting group foods. You may see some improvement within 2 weeks if food intolerances are the issue. Your 5 foods should not include any of the top 8 common allergens.

Maybe you and your sister can do the elimination diet together? That way you can lend each other support.

The other thing is to try only eating whole foods, and no processed foods. Cooking your own foods at home lets you know for sure what is in it and that is valuable knowledge.

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I haven't been on here for a few days (and Kareng, thank you, I missed your post before). I honestly don't know if my thyroid has been checked. I am on iron and B-12 as I was very deficient (again) in both. Now that the holidays are over, I'm going to give the elimination diet a shot. Plus, I really need to lose some of the weight I've packed on lately. So I guess, salads and chicken it is for a while. Maybe I can talk my sister into doing the elimination diet with me, but I don't know if she will. She's kind of bullheaded (like it runs in the family or something ;) ). Even after my latest - Bethanne is an idiot- glutening, I do feel better than I have even when I posted that. I'm starting to feel a little more awake now that I'm back on extra supplements. I've noticed that last week all 3 days that I worked, I managed to make it through the day without having to go home early (Thank God for small favors because I'm in the negative in sick leave).

GFinDC: Thank God! "I think Bartful meant to say 3 weeks on the 5 foods, not 3 months" I was like 3 months... uuuuugh. I can handle a couple of weeks. Yanno, I am going to do it. I can't keep going on like this. I HAVE to start feeling better.

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...

GFinDC: Thank God! "I think Bartful meant to say 3 weeks on the 5 foods, not 3 months" I was like 3 months... uuuuugh. I can handle a couple of weeks. Yanno, I am going to do it. I can't keep going on like this. I HAVE to start feeling better.

Ha ha, yeah that would get a tad boring for sure. You could start with onions, mushrooms, sweet potatoes, chicken, and spinach. If you don't feel better in 5 days, look at swapping out one of those 5 foods for something different. It is possible you could react to any foods, so one of those 5 could be a problem. Some people suggest lamb as a starting meat since most people don't eat it as often.

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    • Hi, Ok good advice and I am sincere when I say how much I appreciate a lot of the responses, advice and encouragement that have been posted here. I'm not sure what a nutrionist is but a dietician (here in the U.K.) is a heavily regulated medical profession and my dietician is based most of her week in a hospital where doctors and MD's as they are known refer patients to her for help. She works every day with celiacs, dh sufferers and people with crohns, ibs etc and seeing my skin, listened to what I was saying (particularly about how my redness and blisters resolved on a gluten free (though not wheat free) diet for several years, and sent a report to my doctor/MD requesting a battery of tests - tests that can indicate dh, celiac and associated complications. I also have a friend with a wheat allergy and two with celiac (all diagnosed) and they are encouraging me to go ahead with getting these particular tests. So that's great but reading the above quote that suggests that situations like sharing an oven used to cook gluten-containing pizza, should not cause a gluten reaction. I thought, my god what's the point of going through these tests if my recent reactions aren't actually to do with gluten. Although my dietician is concerned about possible dh and has been through years of medical school, I also really trust the advice of an advanced member on this site and if they think oven-sharing shouldn't cause any gluten reaction, what hope do I have with an MD? It has taken me years to pluck up the confidence to ask for any medical help because I feared that sort of response along with a focus on psychological issues and hormones etc early on in the thread (even though, I only started feeling depressed since yesterday). Actually, I'm a mental health nurse so it's good to see people are alert to these issues but I am also pretty familiar with depression and I know that many people with physical health problems are fobbed off by doctors with talk of depression, stress, and hormones. I'm sorry that I took the (above) quote to heart and I know that I allowed that to colour my perception of the whole thread, which has been helpful in many ways. Best wishes to you all, even those I didn't agree with! Rhian 
    • I thought maybe doing a trial period to see if he reacts positively to being gluten free and then adding it back to see if symptoms come back would maybe be helpful to the doctor? But I guess that's true, it might skew things regarding any future tests that might be warranted. 
    • If you haven't had her tested yet please do not go gluten free. Get the celiac testing first as if she does feel better gluten free when she has to go back on gluten for testing she may have much worse symptoms.  There will also be a higher risk of false negatives.
    • I did not mean to imply that you should put him on a gluten free diet.    If you suspect a problem with gluten, please get an opinion from a GI who is celiac savvy.  All celiac testing requires a patient to be consuming gluten.  The slightly equivocal TTG?  That warrants a gene test at the very least.   http://www.mayomedicallaboratories.com/it-mmfiles/Celiac_Disease_Diagnostic_Testing_Algorithm.pdf  
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