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Jenny1972

By Jenny1972
in Coping with Celiac Disease

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Jenny1972 Rookie
Jenny1972
Posted

Hello

I really need help but don't where to turn. I was told 3 months ago that I had celiacs. I started a gluten free diet which really helped. I have a history of eating disorders which I finally sorted out about 5 years ago as I have a son who I didn't want to let him think it was OK to mess around with food. The guten free diet has been fine. I really enjoy it as its much healthier. Now the doctors are unsure I have celiacs. They want to do a biopsy and expect me to eat gluten again. I am not happy about this. On top of all this I have been getting very bad abdominal pains which the doctor think could be cysts on my ovaries. The pain is worse when I have my evening meal so I am not eating much. I am slowly getting back to my old habbits of not eating. I can't seem to enjoy food anymore. It was hard enough being told there are things I can't eat and now when I do eat it make my pain worse. I ended up in casualty Sunday night with really bad pain and they sent me home with even stronger pain killers and said to wait for my hospital appointment. I accidently overdosed on pain killers and made myself very ill. trying to cope on my own with my 12 year old son. I have no family so really can't cope with things anymore. Feel so lonely and desparate. What can I do? Always been a fighter but starting to loose my will to carry on. I will keep going as my son needs me but getting harder and harder.

Jenny

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RiceGuy Collaborator
RiceGuy
Posted

I'm sorry that you are having such problems.

I don't blame you for not wanting to eat gluten for the tests. Personally, I wouldn't do it. It seems to me that you already have proof that the diet works, so what difference would tests do at this point? If they came back negative, would you go back to eating gluten even when doing so gives you a lot of problems?

Have you been taking any supplements? It seems Celiac disease often hinders the body's absorption of nutrients, making supplementation necessary. Minerals such as magnesium and calcium, as well as vitamins like B12 and D are among the ones which come to mind. These can help quite a lot even when blood tests suggest your levels are normal.

That's about the only thing I can think of ATM. I'm sure many fine members here will have some good info and advice for you.

NoGluGirl Contributor
NoGluGirl
Posted
Hello

I really need help but don't where to turn. I was told 3 months ago that I had celiacs. I started a gluten free diet which really helped. I have a history of eating disorders which I finally sorted out about 5 years ago as I have a son who I didn't want to let him think it was OK to mess around with food. The guten free diet has been fine. I really enjoy it as its much healthier. Now the doctors are unsure I have celiacs. They want to do a biopsy and expect me to eat gluten again. I am not happy about this. On top of all this I have been getting very bad abdominal pains which the doctor think could be cysts on my ovaries. The pain is worse when I have my evening meal so I am not eating much. I am slowly getting back to my old habbits of not eating. I can't seem to enjoy food anymore. It was hard enough being told there are things I can't eat and now when I do eat it make my pain worse. I ended up in casualty Sunday night with really bad pain and they sent me home with even stronger pain killers and said to wait for my hospital appointment. I accidently overdosed on pain killers and made myself very ill. trying to cope on my own with my 12 year old son. I have no family so really can't cope with things anymore. Feel so lonely and desparate. What can I do? Always been a fighter but starting to loose my will to carry on. I will keep going as my son needs me but getting harder and harder.

Jenny

Dear Jenny,

I have those pains as well in my lower abdomen. I have had cysts in the past. They are painful. I worry I have them again. :( I know how you feel about not being able to enjoy food. I could have more intolerances. I have been sick a lot lately. My parents do not help. They glutened me once a week for the past couple of months. They think I am just being paranoid. They do not understand the seriousness of this condition.

Doctors can be such idiots, too. I get violently ill from gluten, and would not go back to taking it for a test, either. I fear it as though it were rat poison. :unsure: I cannot take the misery it brings. First, I break out in a sweat, then I get really nauseated, and have diarrhea. I often shake and sometimes my hands go numb. :( If I do not get a promethazine down quick enough, the dry heaves start. They are so severe that it often feels as if my sides are emploding! :o

Go with your instinct on this. It never steers you wrong. Your body probably has not recovered from the accidental overdose. Those pain meds are dangerous! I never take them! Not only are the addictive, but if they do not agree with you, they can really mess up your system. You should be proud of yourself for conquering eating disorders! ;) They are difficult to stop. Many people have died from them. Please keep eating! I know it is difficult at times. Eat for life! Just be careful. Keep in mind eating for your son is important.

Sincerely,

NoGluGirl

Susanna Newbie
Susanna
Posted

Jenny--what a rough time! I'm so sorry you're having to go through it. I say, if the gluten-free diet was working for you at least initially, stick with it and I would NOT agree to gluten challenge in order to get a biopsy. What about Enterolab? Lots of people who post on these boards have used Enterolab and gotten diagnosed that way. I think you can mail in a stool sample, and they can tell you if you have celiac from that, and I don't think you have to be eating gluten to do that test. Check them out.

Regardless, your pain is real, and worrisome, and does need to be investigated. Have you had your gall bladder evaluated? Also, you might want to get seen by a naturopath--I think they've got it going on way better than modern western medicine does in regard to funky disorders like celiac disease.

Good luck with this--don't give up--you're too important to your son and yourself.

Susanna

Tritty Rookie
Tritty
Posted

I am so sorry to hear that you are having such a hard time :( You've come to the right place for support - there are many here that are happy to help and just listen if need be!

What kind of test was taken the first time when they told you that you had celiac - and why are they questioning that you don't now? I went gluten-free immediately and was gluten free for quite a bit before my biopsy. THere was still plenty of damage to be seen. It takes longer than 3 months to heal - I wouldn't go back on gluten for a biopsy.

I think Rice Guy is right - you need to get your levels of vitamins checked and make sure you get everything in balance. But why would food affect your pain if they were cysts? Maybe you have another intolerance that you're not aware of. A lot of people here seem to have other issues with soy or corn or whatever. I don't know much about figuring that out - I haven't had to yet - but I'm sure there's someone here with some great advice.

Until you figure things out - maybe just try and stick to a very natural diet - veggies, fruit and meat. See if that makes a difference....

Good luck - we'll all be rooting for you from our parts of the world :)

Budew Rookie
Budew
Posted

Jenny-

Bummer sometimes isn't it! Glad to hear you are a fighter! Me too! Really gets me when I start to lose the will to continue the fight, but everytime, someone comes along says the right thing and I am fighting again.

I can identify with not wanting to eat. Watching the scale works for me. If I drop below 110 I push myself to increase calories, 117-123 I congratulate myself and pay no attention, if ever over 124 I suppose I'd cut back calories (never happened). For me eating is rarely fun, food is the medicine that keeps me healthy. I have identified many food reactions over time, gluten, all grains, and salicylates cause all of the reactions I have identified and remedied.

Pain...really tough nut to crack for me. About 1.5 years ago I began pain meds, very small amounts. It was such a relief to move without pain and to enjoy activities. I did not focus of aching all over, began smiling again. Slowly the dose increased, finally I was on 2 kinds, But recently I began to feel nausea and was constipated, it seemed unrelated to any particular food. So I stopped the pain meds just a week ago. Rather hard to suffer again. My pain is all over not digestive, but fasting and regular bowel movements help alot. Still searching for the cause because life should be better than this, I did an essential nutrient evaluation. Showed my doc and he sugested coQ 10. It has helped some (at least I am not crying). I use ice, hot showers, and exercise for relief. This is a bit personal but masterbation also gives relief when I am going out of my mind. I don't really know the cause of my pain yet, but hope I can find the source in my nutrient profile. Hurting is not normal, and I believe coping is a short term answer. I am determined to fight to find the cause.

As far as making yourself sick to prove something. Only do what seems right to you. You don't have to prove anything to anybody but yourself.

From one fighter to another hang in there. Focus on the improvements.

Budew

gfpaperdoll Rookie
gfpaperdoll
Posted

Dear Jenny,

Yes I send lots of hugs to you. You have gotten this far, you can get this all figured out.

Of course get checked in case it is a cyst. But a lot of people, including a friend or mine & her daughter get a really bad pain in their side from gluten. My friend has spent a lifetime of going to doctors & not being able to sleep at night & taking pain meds etc. Once she went gluten-free all that went away.

I vote for no gluten challenge. I am a big supporter of Enterolab.com My family & my friends have tested there. I love their gene test also, because they also test for the gluten sensitive genes (same thing as celiac really, maybe worse if you have double DQ1 like me) DQ1 & DQ3 in addition to DQ2 & DQ8. They also test for dairy & soy intolerances.

If you have not also eliminated dairy, I would start there first. Make sure you are getting a balanced diet with enough carbs like rice, beans, white potatoes (if you can tolerate them), sweet potatoes, Mission Brand White Corn Tortillas, Lundberg Rice Cakes & Lundberg Rice chips (no cross contamination on those) all natural peanut butter, and make sure you are getting enough oil, like cooking with olive oil & eating nuts.

Good to get all your vitamin levels checked. Start taking a B12 everyday, I get Nature Made brand at Walgreens, They run a 2 for 1 special a lot. Take that B12 no matter what your levels are...

Not sure if you have completely cleaned out your kitchen of all porous items that might have come in contact with gluten. Is anyone else in the house eating gluten foods?

I am hoping you can get off the pain pills soon, I agree with others they are just so bad for you & really do not do anything but make stuff worse.

If you make sure you have a safe area to prepare your food you could just eat the same things for a few days & see how you do. Check out elimination diets, & specific carbohydrate diet. You might also want to get food allergy tests done - but the elimination type diet should tell you that info right away.

Also, remember to wash your hands before handling your food. I totally advise to just eat whole foods and not to introduce any gluten-free cookies, crakers that type of thing, until you are symptom free and a couple of months into the gluten-free diet.

I hope some of this helps - feel free to PM me if you would like.

Here is thinking of you all well & happy & experiencing new adventures

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  • 2 months later...
Celena Rookie
Celena
Posted
Hurting is not normal, and I believe coping is a short term answer. I am determined to fight to find the cause.

Budew

Good on ya! when my DH was lived with mind-blowing constant pain most people (friends, relative, and Dr's) said he would have to learn to 'live with it'.....BS...NOT POSSIBLE!!!!

Keep going and find your cause too. My DH is now pain free after many many doctors and treatments of all kinds. We eventually found the cause and the cure all at once!

please all of you in severe chronic pain: look into intramuscular stimulation (IMS). www.istop.org

Good luck and keep searching.

mftnchn Explorer
mftnchn
Posted

Just a note that Enterolab does not diagnose celiac. They don't claim that. It does give information about gluten sensitivity and absorption, plus genes, etc.

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