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New Here And Having A Difficult Time Coping
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Hello,

My name is Michelle and my Dr. 4 weeks ago told me she feels I have Celiac Disease. I had all the symptoms and then some. The worst being the intense pain in my entire abdomen that was keeping me up day and night. I am 45 years old, and I have been struggling with this "mystery illness" for approximetly 23 years that I am sure of. I have been to at least 10 different doctors, and had ultra sounds, bloodwork, x-rays, cat scans, etc...I have had migraines with aura for 30 years. I have been diagnosed with IBS,Fibromyalgia,Chronic Fatigue, anxiety disorder, depression and a low positive Epstein Barre and constant joint pain. My teeth are are very weak and becoming worse.

Every female member of my family have or has had, autoimmune disorders-Sister with Lupus, positive ANA, another sister with Fibro, and IBS, Grandmother with IBS,and who knows what else-she passed away. And finally my Mother, whom I just lost 2 weeks ago to Lymphoma. She struggled with Lupus?, Fibromyalgia, IBS, Diabetes, heart disease, horrible rashes, and they didn't catch the cancer until she was late 3rd stage. She was 67.

Now just after the bloodwork came back and my doctor told me this-literally the same day, my mother began to decline very rapidy and we spent the next 2 weeks caring for her at my sisters home. It was 24/7 and it took alot out of us-(thank God for Hospice). I have not touched any wheat,or wheat gluten since the day the Dr. told me.

My migraines have all but dissappeared, still get a few, but I had them almost every day, the pain in my abdomen has subsided immensley, but is not gone. I still have extreme heartburn, and some pain when I do eat. I am still having anxiety and depression issues, but that may be due to losing my mother, who knows. My joint pain is still very much there.

I gues my reason for joining this group is because I need to know what I can expect, how long before I feel normal(or somewhat normal)? I am going to a specialist very soon, but money is an issue and my insurance really is close to worthless. My doctor works with me as much as she can.

So, if you all can help me figure out what should happen in normal cases, what shouldn't happen, and just what I can expect for the most part, I would be very grateful. I am overwhelmed and guess I just need some direction from others who "get it". As of now, I get alot of- oh, its just an allergy?

What can I say to convince my daughter she needs to get checked and so does my grandaughter,( who already at 2 years old has tummy problems.)? Its like I am not being taken seriously.

Thanks in advance if you can share some info...

Michelle

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Hi and Welcome!

I am sorry for your loss..... I hope you will soon feel better. It must have been hard for all the family..

now..Let's see your celiac related problems.

Nobody will be able to give you a healing time. It is very common to feel better in 2-3weeks and then still have some issues that will go away gradually in several months or years. But most of us, after some months are extremely better.

The one thing you have to start with, is to find hidden gluten. Read read and read all the posts (ok...not ALL..but as much as you can) and find out where gluten can be hiding. In places you cannot imagine. Your toothpaste, cosmetics, spicies, body lotions, sauces, cheese, alcohol. etc etc.....On the home page this site there is an article with all the hidden ingredients.read that. also watch out for cross contamination (cc). If your daughter puts her glutened knife in the marmelade jar than your marmelade has gluten......You must consume no gluten at all. not even a littel bite. so be careful and let no one touch your food. it is also important to replace wooden knifes etc cuz they keep gluten in their wooden surface.

you can tell your family that if they have celiac (and there is a 10% possibility that they have) they are "open" for cancer, lupus, multiple sclerosis and more (do you really want more??)

and as for the allergy part.....I strongly suggest that you no longer mention celiac....people just can't get it. I say I have an allergy in everything and they leave me alone. any way it's up to you.

feel free to ask anything. believe me it is sooooo easy when you get used to it. there are so many foods you can have. really. it is a very "good" disease since it requires no medication and you get completely well just on diet (which is very very healthy too).

let us know how you are doing

Meline

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What Meline said.

I also want to add that you will figure this out, and it will all get easier. Don't be afraid to try taking other things out of your diet to see if your other symptoms are related to different foods. Casein (dairy), soy and corn are some of the big ones.

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Hi Michelle,

I'm so sorry about your mother! I hope all of the positive changes you're making will help lighten your load physically and mentally. Grief is really draining.

I just wanted to welcome you to the group and add my $0.02... the gluten-free diet made a HUGE improvement in my symptoms, but I felt even better once I stopped eating corn.

With all the autoimmune disorders in your family, I agree it's best if you just assume this is celiac disease... the gluten-free diet certainly won't hurt you. If you're confident about your diet and always insist that you need to be careful (no cheating), other people will get used to the changes! You will too :) Once your family sees that you're feeling better I bet more of them will be interested in getting tested and/or trying the gluten-free diet.

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Hi Michelle and welcome! I think you'll find that you've come to a great place, this site has helped me tremendously. I'm sorry to hear about all of your trials and tribulations. Many of us here can relate. I can only tell you that for each of us, the healing process was different. Some find relief right away, some takes months to years. You'll make mistakes, we all do. You'll have to go through trial and error as to whether there are other food intolerances (some permanent, others only until you heal), and if there are other autoimmune disorders present. I'm still working on that! I hope you heal quickly and fine relief soon. We're all here if you need us. The advice to read, read, read is a good one.

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Don't be afraid to try taking other things out of your diet to see if your other symptoms are related to different foods. Casein (dairy), soy and corn are some of the big ones.

oops.... :rolleyes: I forgot that!! and it is very very important!!!!!

Meline

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I just got diagnosed too- a little over a month ago. I had migranes with auras too- for about five years. I'm lucky I guess because there's more awareness now about celiac so I only had severe problems for 4 months or so before I got diagnosed. Auto immune stuff runs in my family too- I'm really worried with this diagnosis because MS runs in my family. I really scares me. I'm 21. All my friends and family think I'm a hypochondriac now and its really hard because now I feel like I can't really talk to anyone. I also think I'm allergic to raw onions and I feel like I can't tell people I don't want to eat them because that will add to the hypochondriac fire.

I would suggest taking probiotics and eating tons of vitamin C while you heal. I'm also having trouble being a hundred per cent at not eating gluten- I accidentally get poisoned a lot.

best of luck,

el

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Hey Meline,

I have actually found what you said to be true!! After I read your reply, I was showering and noticed that wheat starch is in my conditioner! Unbelievable!

I am finding it very difficult to locate food, I live way out in the country and I have to travel a good hour to a Trader Joe's for food, and boy is it pricey!

I am really having to adjust and I think it's just been an awful lot to deal with in a short time.

Thank you all, for the info.

Michelle

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Hello El,

Honey- I feel for you..But remember this-(I have age on my side, so its easier), You have to take care of you and protect yourself. It doesn't matter what people think, you have to do what is safe and going to make your life better. ( I know this is easier said than done!)

I am going to try the probiotic thing, in fact I am on my way now to a friends house for that.

This group seems awesome and really supportive, take advantage of their knowledge, I know I am going to!

Take it easy,

Michelle

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Welcome aboard, and oh, I am SO sorry to hear about your mom. It must have been very difficult for you (and still is, I bet).

For now, you don't really need any special, gluten-free foods. Stick with rice, veggies, plain grilled beef, chicken, fish, etc. If you've never had a problem with eggs, there's a lot you can do with eggs!

For now, the only other food I'd recommend cutting out would be dairy, because damaged villi don't produce the lactase that you would need to digest it. However, if you find that this is just too much to deal with all at once, try taking Lactase if you have cheese. Milk (like, to drink) is VERY easy to substitute, as even the little stores in the middle of nowhere seem to have soy milk, rice milk, almond milk, etc., and you can mail-order them off Amazon and have'em delivered to your door.

Beware of Rice Dream brand rice milk, though--it says, "gluten-free" on the box, but it isn't--it's processed with barley enzymes, and a number of people here have had bad reactions.

Unless you have reason to suspect corn intolerance, I think you'd be all right with corn. Corn tortillas make good breakfast burritos, pizza crust, and lunch wraps (heat'em for a minute or two on each side in a frying pan before wrapping), and Fritos are gluten-free and make great munchies for when you are frustrated. There are also recipes for corn bread that call for ONLY corn meal (no flour), and that makes an easy quick bread when you are desperate for bread.

If there is a specific dish you are craving (one of your mom's comfort food recipes, maybe?), post a thread (or pm me if you like), and several people will offer gluten-free makeovers so you can still have it.

Most of us reading your post here are thinking the same thing: how could your doctors miss your family's celiac? IBS is usually undiagnosed or misdiagnosed celiac. Fibro probably is. Most fibro patients experience enormous improvement upon starting a gluten-free diet; I'm guessing that those who don't probably have long-term damage that takes much longer to repair (if ever), or else they have another underlying cause, like Lyme disease (also often missed).

My endocrinologist told me that she is now screening all diabetic patients for gluten intolerance/celiac, because she is seeing them together so often.

Chronic Fatigue Syndrome, like fibro and IBS, has the same symptom list as celiac. Lupus also overlaps on the symptom list, and I suspect that it's one of the conditions that results from long-term gluten ingestion when you are celiac.

Most people here report that their migraines disappeared on a gluten-free diet.

Joint pain is OFTEN celiac-related. You understand that celiac is an autoimmune condition, where gluten triggers the immune system to attack oneself, right? Rheumatoid arthritis is basically gluten triggering the immune system to attack the joints. Autoimmune thyroid disease, like Hashimoto's, is gluten triggering the immune system to attack the thyroid. Coincidentally (well, not really), low thyroid can cause joint pain.

Most of us on this board saw our joint pain improve or disappear on a gluten-free diet. You won't hear that from the pharmaceutical industry, though, because they don't make any $ from your changing your diet. They only make money from your buying their joint pain drugs, which mask symptoms, but cause side effects and don't address the root cause of the pain anyway.

I'm afraid one more thing you'll want to research is vaccines--many of us here have terrible reactions to them (though some here are fine with them). A good place to start research is www.nvic.org, as well as www.putchildrenfirst.org and www.generationrescue.org.

If your granddaughter is only 2 and having tummy problems, that does put her at much, much greater risk of developmental difficulties such as autism. Best to know about it NOW,and research as much as you can. The number of members here with autistic children is astounding, and there is a very, very strong link, as the majority of autistic kids have celiac disease. Most of them have also had severe reactions to vaccines, too, so there's a link there, too.

I'm not saying not to vaccinate at all--but the most prudent thing by far would be to allow only ONE vaccine at a time.

I'm glad your doctor works closely with you--perhaps SHE could be of use in convincing your family (ALL of them) to get tested? Especially if you notice major results with the gluten-free diet?

Sorry to throw so much info at you at once. Best of luck to you, and please keep us posted, okay?

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Just wanted to add:

be careful of

Soy sauce (often contains wheat)(LaChoy is safe but sucks)

tuna salad (deli kinds contain bread crumbs, no kidding!)

rotisserie chickens (often marinated in wheat-containing-soy sauce)

"lite" ice creams (contain wheat starch as thickener)

Rice Krispies and Corn Flakes (contain barley malt=gluten)

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Hi Michelle,

I have (had :D ) migraines too, and they mostly went away with the gluten-free diet, but when I was tested with Enterolab, I found out I also had problems with casein, the protein in dairy. I didn't cut it out completely, but I cut out everything except some goat cheeses and cream cheese. Those don't seem to bother me. Anyway, with going casein-lite, that took care of the remaining migraines. A miracle after 40-some years of them.

Good luck on your quest and I hope this is the solution for you.

Laurie

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I want to thank all of you for your insight. I have started reading all of the posts here and I am getting a lot of information, but alot is slipping right out. I have been sick for so long that I am skeptical, but hopeful.

I have alot more questions but I just need to read first.

My biggest concern is my grandaughter, and making sure she is protected.

I'll be posting soon!!

Thank You!

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Hello my friend! I too am new here and have suffered with this mess for 30 some years. I just saw someone mention Lupus. Kind of strange for I started out with the upset stomachs and headaches back in my younger days. Then it went into fatigue. I now have Lupus, B12 Vitamin D Osteosporsis and Neuropathy. I read all the symptoms in here and never even thought of Celiac until my doctor mentioned it!

My kitchen is full of wheat and gluten. No wonder I have been so sick! I know of four family members and possible 2 more that might have Celiac Disease. My mother, my daughter, my nephew, my grand-daughter and my son and then me.

I called a family member tonight because my daughter is staying with them and she totally ignored what I told her about Celiac. Of course my daughter is grown up now and could have called me after leaving a message on her cell phone. I am in a second marriage and my first marriage was a nightmare.

My in laws in my first marriage were alway's trying to start something with me. They loved making up things and accusing me of things I never did! And my first husband was a drug addict and alcoholic. That is one reason I left the man! My children never saw any wrong with that family. They would rather believe them than believe me!

My son and I are very close but my two daughters are not as close. Mainly because of this one person!

But my children even though I can't stand my in laws and don't want any parts of them, they still want to hang around that family.

I have a feeling that person is not going to give my daughter the message or even try to convince her to get checked out.

So I know what you are going through. My one daughter already had a positive skin biopsy for lupus. And nobody back then wanted to listen to me either. I got totally ignored and then later she tested positive.

With me having illness that are auto immune, I can tell when another person is sick! After being sick as long as I have been, you can see it in other people just by watching and listening to their symptoms. So I know when another person is sick!

But I know what you are going through. I have lost 30 years of my life to being sick and it's not fun having and then feeling as if nobody cares really hurts.

Being sick, you learn how some family can be cold and brutal and ignorant.

I am tired of being sick and can't wait to see myself getting better. So I truely know how you feel.

Not easy having a husband that you love so much and yet you are up all hours of the night with this mess!

The two of us are new in here but if we stick together one by one we can make ourselves get better. One day at a time, one step at a time and I tell you what!

Since we both have been sick for a long time, we both need to set a goal!

Next year... we are both going to take our first vacation away from home and have the life we missed all these years from being sick!

Just wonder which one of us is going to be the first one set free! Good luck and best wishes.

Linda

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Ok, so last night I totally blew it, even after reading the info on staying away from soy sauce...I just put it in my rice and veggies like I was crazy!! It didn't even dawn on me. I was sick all night.

If I had any doubts about what was wrong with me before, I don't now. The pressure and pain was back in full force. I also got a migraine that about made me dizzy. And that is the first one I've had in a while.

Laurie- I am really sorry about your personal issues, but it sounds like things are getting better, just get rid of your wheat products. I am trying to learn coping skills and just deal with it.

Fiddle-Faddle- You asked how my family doctor could have missed all these symptoms? I have no idea, but the fact that my Mother's Dr. never ever even looked into it, and now she is dead at 67 years young. She was an angel and she was at the Dr.'s constantly. My Mother's Lymph nodes were the size of softballs in her groin and chest!!! How do you miss that!? All I can say is we have to hope our Dr. is up on research.

She had auto-immune disorders everywhere.

I myself saw 10 different doctors in 20 years. I am now really concerned with what damage I may have done. Thank you for all the info you gave me-and I did read what you said about soy sauce, why I didn't retain it, I don't know...

;)

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Welcome to the celiac club Blue! ;)

There is some real good advice in here already. I just want to mention a few things to think about. Getting started going gluten-free can seem a little overwhelming at first. There are lots of ingredients to learn about that might have seemed just fine before but now all are suspicious characters. Trying to research and learn all of them at the beginning is putting you in a tough spot I think. It is simpler to just avoid any processed foods that have long lists of ingredients which sound more like chemicals than food. I think it is easier to cut all highly processed foods out to start, and only add them back in as you get more familiar with things. Myself I stick mostly to rice and veggies and meat. Oatmeal for breakfast with a nanner and some peanut butter or raisins. Watch out for spices also as some of them, mostly spice mixes, can contain gluten as a drying agent. Mccormick single ingredient spices are ok. You can learn a lot by doing a google search on the food and the word gluten. Some food maker's list gluten status on their sites also. I think a good bet is to avoid baker's yeast and nitrates as well, but that's not something that affects everyone.

Don't forget to have your blood checked for vitamin levels. You may need to take some extra vitamin supplements while your gut is healing. Celiac can cause mal-absorbtion which means your vitamins/nutrients aren't absorbed well by the gut.

Oh, there is a new home celiac test called Biocard made in Canada. It is not available here in the states yet, but is supposed to be next year. About $50 bucks for the test. Could be something to consider for your relates.

Now if you can just learn the secret club handshake...

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Hey Meline,

I have actually found what you said to be true!! After I read your reply, I was showering and noticed that wheat starch is in my conditioner! Unbelievable!

I am finding it very difficult to locate food, I live way out in the country and I have to travel a good hour to a Trader Joe's for food, and boy is it pricey!

I am really having to adjust and I think it's just been an awful lot to deal with in a short time.

Thank you all, for the info.

Michelle

PLEASE BR CAREFUL AT TRADER JOES! It used to be my favorite store...until i was confirmed Celiac. Almost all of their products are manufactured in the same factories-- which means major cross contamination. You should not eat anything processed in the same factory as gluten prodcuts. So just be careful :-)-- the products are all labled

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Ok, so last night I totally blew it, even after reading the info on staying away from soy sauce...I just put it in my rice and veggies like I was crazy!! It didn't even dawn on me. I was sick all night.

If I had any doubts about what was wrong with me before, I don't now. The pressure and pain was back in full force. I also got a migraine that about made me dizzy. And that is the first one I've had in a while.

Laurie- I am really sorry about your personal issues, but it sounds like things are getting better, just get rid of your wheat products. I am trying to learn coping skills and just deal with it.

Fiddle-Faddle- You asked how my family doctor could have missed all these symptoms? I have no idea, but the fact that my Mother's Dr. never ever even looked into it, and now she is dead at 67 years young. She was an angel and she was at the Dr.'s constantly. My Mother's Lymph nodes were the size of softballs in her groin and chest!!! How do you miss that!? All I can say is we have to hope our Dr. is up on research.

She had auto-immune disorders everywhere.

I myself saw 10 different doctors in 20 years. I am now really concerned with what damage I may have done. Thank you for all the info you gave me-and I did read what you said about soy sauce, why I didn't retain it, I don't know...

;)

Bragg's Liquid Aminos is a great gluten-free sub for soy sauce.

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Bragg's Liquid Aminos is a great gluten-free sub for soy sauce.

I have the San-J wheat-free tamari(it's gluten-free), I think it tastes fine, but I'm not a soy sauce aficionado.

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Welcome to the celiac club Blue! ;)

There is some real good advice in here already. I just want to mention a few things to think about. Getting started going gluten-free can seem a little overwhelming at first. There are lots of ingredients to learn about that might have seemed just fine before but now all are suspicious characters. Trying to research and learn all of them at the beginning is putting you in a tough spot I think. It is simpler to just avoid any processed foods that have long lists of ingredients which sound more like chemicals than food. I think it is easier to cut all highly processed foods out to start, and only add them back in as you get more familiar with things. Myself I stick mostly to rice and veggies and meat. Oatmeal for breakfast with a nanner and some peanut butter or raisins. Watch out for spices also as some of them, mostly spice mixes, can contain gluten as a drying agent. Mccormick single ingredient spices are ok. You can learn a lot by doing a google search on the food and the word gluten. Some food maker's list gluten status on their sites also. I think a good bet is to avoid baker's yeast and nitrates as well, but that's not something that affects everyone.

Don't forget to have your blood checked for vitamin levels. You may need to take some extra vitamin supplements while your gut is healing. Celiac can cause mal-absorbtion which means your vitamins/nutrients aren't absorbed well by the gut.

Oh, there is a new home celiac test called Biocard made in Canada. It is not available here in the states yet, but is supposed to be next year. About $50 bucks for the test. Could be something to consider for your relates.

Now if you can just learn the secret club handshake...

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    • You should see a GI specialist before you go gluten free.  They should do a upper endoscopy to check for celiac damage.  Colonoscopy won't show anything related to celiac.  Also no you should not feel worse on gluten free, you should feel better.
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