nasalady

I developed fibromyalgia four years after I went gluten free, three years after I went dairy free/soy light. A number of things were tested for (including RA and Lyme), and I'm pretty sure that it's fibro I have. I caught it early (about as early as you can be diagnosed with it), and am almost certain that it was caused by significant, unrelenting stress over the period of a year and a half. Meds have helped me, along with trying to deal with the stressors in a number of ways.

Wow! Developing fibro AFTER going gluten free; I hadn't even thought about that possibility!

I have read that stress can trigger the onset of fibro. I'm glad to hear that the meds are helping.

Take care,

JoAnn

I am 67 years of age and was diagnosed last November. So its been 1 year. I started out confident I could follow the diet and that it would be a snap for me since I never did like breads or starchy foods. What a shock I was in for! My biggest obstacle is the one of cross contamination. I still haven't learned just how far I have to go. I do hope someone can give me some guidelines or advice on cross contamination.

Hi Sharon Marie,

I'm having the same issues. In my house, we've ALMOST gotten rid of all gluten-containing foods...we're still in the process. So there is still a risk of cross contamination from the kid's crackers and stuff like that. Also, I haven't yet thrown away and replaced all plastic ware and wooden items from the kitchen, which is an important step. I have bought myself a cutting board that is "mine", which is gluten free, but there's a lot more that needs to be done, like replacing the toaster, any pots and pans with scratches that might harbor gluten, and all plastic bowls and containers and utensils. Anything porous that might have gluten inside of the pores has to be replaced.

Unfortunately I'm in a wheelchair (fibromyalgia and rheumatoid arthritis) and can't do it all myself. My husband is "frugal" (which is the polite way of saying cheap ) and doesn't like the idea of throwing away good kitchen items or food that he could eat even if I can't.

I'm making progress though. We just threw out all gluten bread and I made a loaf of gluten free bread that my husband actually likes! Now we need to find crackers and chicken nuggets for the kids that are gluten free.

The scariest thing is realizing that anyone who has touched a gluten-y food can contaminate anything else that they touch....doorknobs, faucet handles, refrigerator door handles, etc. Or that I can be glutened by a kiss from my husband if he's eaten gluten without brushing his teeth. So I really think I'm going to continue to have problems until we go 100% gluten free as a family.

Good luck!

JoAnn

I had an abdominal ultrasound and the technician said there were a lot of cysts. I wonder if they are caused by Celiac Disease?? I dont' go back to the specialist until Jan. 19th to see what's next.

Hi Joan, and Welcome!

I'm so glad you ended up with the new doctor who figured out what was going on!

I have read something about polycystic ovary disease being common in women with celiac disease. Are you talking about cysts on your ovaries?

Anyway, I would like to know about the migraine/Celiac connection, too. I have had migraines for years. I am also getting osteoporosis and am on antidepressants for chronic depression--all listed side effects of this Disease.

All I know about the migrain/celiac connection is that when I avoid gluten my headaches are less frequent and just not as bad in general. They haven't gone away completely yet, but I've only been gluten free for about 5 weeks now. I too have osteopenia, but am now on Fosamax and calcium.

Are you being treated for osteoporosis?

Take care,

JoAnn

Joanne, you might want to pm rachel_24 on this board. She has lived in California all her life, has no pets, and was never aware of a tick bite (let alone any rash)--and she, like a ridiculously high number of people on this board, was definitively diagnosed with Lyme disease.

Besides for an overlap of symptoms, Lyme shares a very important link with celiac disease: both diseases have a history of having been "taught" in med school as being extremely rare, and limited to certain symptoms (like the "bull's-eye rash" for Lyme, which occurs in less than half of those diagnosed, or wasting away, which is a symptom for less than half of celiacs). In addition, most doctors were taught glaring inaccuracies about both (like, Lyme disease only occurs in certain areas (NOT true at all), or celiac disease occurs only in children, who outgrow it (NOT true, as we all know).

Oh, I know that Lyme disease can definitely occur in California, especially in Northern CA on the coast. But the incidence in CA is 0.2 per 100,000 as compared with New England where the incidence is on the order of 45 per 100,000. Statistically speaking, it's less likely in CA. As a scientist, I try to research stuff like that.

AFAIK, I don't have Lyme disease, so I can't speak from personal experience. But the dad of one of my students did, and he was bounced from doctor to doctor for YEARS. They even sent him to a psychiatrist, who asked him why he was "refusing" to get better. It wasn't until he started having seizures that the neurologist said, "well, we've tested you for everything else, we might as well run a Lyme test." And that's what he had.

I must say that I am quite convinced at this point that what I have is fibromyalgia. It runs in my family (my sister has it too). My rheumatologist, neurologist, and PCP all concur with the fibromyalgia diagnosis. Some of my fibro symptoms have improved already on the gluten free diet, especially my brain fog, vertigo, and hand tremors. Do Lyme disease symptoms improve on the gluten free diet?? I wouldn't expect that to be the case.

As to all of the symptoms being identical (Lyme disease vs. fibromyalgia), is this actually true? Fibro is sometimes called a "pain amplification" syndrome. In other words, things that would not normally cause pain, or that would normally be slightly uncomfortable, become excruciating. This is known as allodynia.

For me, I began to suspect fibro when I was hospitalized in June for 3 days and when the nurses flushed my IV with saline or even took my blood pressure I had to bite my lip to keep from screaming bloody murder!

Note also that my symptoms had been coming on gradually for years, I just hadn't put two and two together until that hospital stay.

Is this typical with Lyme disease? Pain amplification and gradual onset of symptoms over a period of many years? If so, please let me know!

In any case, I REALLY appreciate your efforts to educate me about Lyme disease, and I will bring Lyme disease up to my doctor as something that needs to be ruled out! Since I've had SO much blood work done in the past several months, it's entirely possible that they did test me for Lyme and it has already been ruled out. But I will ask.

Thanks Fiddle-Faddle!

Happy New Year!

JoAnn

Yep! Here's a link to the thread about Rh negative celiacs:

https://www.celiac.com/gluten-free/index.php?showtopic=37209

JoAnn

I'm A negative!

Hair color as a child: reddish-brown with blond highlights

Has darkened a bit as I got older.

BTW, I think that there was a thread asking for people's blood types/Rh factors earlier?

JoAnn

Hello,

This is my first entry on this site and I am excited about finding individuals with celiac who also have weight-lost issues. I am extremely overweight and am looking for a weight-lost solution. I am considering surgery, but have not found anyone with my problem that has had any type of gastric bypass surgery.

Can anyone help with this? I am going to see a surgeon in a few weeks (I haven't told him about the celiac).

Thanks for any help you can give.

henn

Because the main issue for celiacs (both the underweight AND the overweight celiacs) is malnutrition, I don't think that bariatric surgery is a good idea for us. I think you should give the gluten free diet several months to a year to see if that helps you lose weight before you do anything drastic and irreversible. In fact, I've already lost a little weight in 5 weeks gluten free, but I will be going on a low-carb gluten-free diet shortly to speed things up; many people in this forum are following the Specific Carbohydrate Diet which is helping them lose weight.

Please reconsider your decision; of course it's up to you, but from what I've heard, bariatric surgery frequently causes more problems than it solves.

Take care,

JoAnn

Very new to the forum and gluten issues. Started with a rash, very DH in nature but not quite like the pics I've seen. Went off gluten (a step-parent is celiac and the rash looked very similar to his) to experiment, rash still there because I only took out wheat/flour since I didn't know all the other "suspects" for gluten. My PCP admittedly is unfamiliar with gluten issues, but ordered blood work and I have them. Dont know what it means but the DR said it's negative for this and recommends I seen a Derm for the rash. (rash improved when all gluten eliminated and took presidone).But it's still lingering and it takes awhile to get in to Derm so, I'm staying off the gluten but want to know the experience of others how helpful is the blood work? Is this the "lab" info I keep reading or is this primarily to do with the gene for celiac disease or the colon stuff (maybe one and the same).

Hi and welcome!

From your post I guess I'm not quite sure about a couple of things, such as (i) did you go off gluten before or after your doctor ordered the blood work?, (ii) what are the results of your blood work? Did the doctor test you specifically for celiac disease? Did he/she run all of the tests listed by Lisa?, (iii) has the doctor suggested a biopsy of the intestine?

If you will be doing further testing, you must eat gluten (probably the equivalent of 2 - 4 slices of bread per day minimum) until all testing is finished. Otherwise you will test negative whether you have celiac disease or not. I also note that you mentioned prednisone. I tested negative and my GI doctor was convinced it was because of the high dose of prednisone I'm on....so be aware of that issue too. The prednisone suppresses the antibodies in your bloodstream and also causes the intestinal villi to regenerate so that a biopsy will likely be negative.

Good luck!

JoAnn

I've also been reading AliB's posts about candida and gut dysbiosis. I wonder if, in addition to being gluten-free, fibro victims need to be sugar-free and low-carb? I hate to suggest it, as if anyone deserves comfort food, it's fibro victims! But if comfort food is actually helping to cause the problems, it's not much comfort....

It might explain why I always felt so good on the Atkins diet!

And I also think it might be important for fibro victims to rule out Lyme Disease, as the symptoms are identical.

Well, for me, since I NEVER spend any time out-of-doors, don't have pets, and was born, raised and currently live in California, maybe not.

But it is food for thought....it certainly doesn't hurt to bring it up to your doctor as an alternative possibility.

Thanks!

JoAnn

I'm trying to find a recipe for bread that I like. I have tried several and they all turn out like bricks!! I have a 20 year old grandson living with us that I think has Celiac. He is very fussy and hates my breads that I have tried. I also want to make bagels, which he loves. I tried one recipe from Betty Hagmans book, but could not handle the dough, it was very moist, so I tried adding rice flour and I still couldn't work with it so it went in the garbage. If anyone has any ideas please post a reply

I've tried lots of the commercially available mixes and some of the Bette Hagman recipes as well, but so far the BEST gluten free bread recipe I've come across is on the "Mennonite girls can cook" blog site:

Open Original Shared Link

This bread is absolutely amazing! The hard part is finding the white bean flour; there are only a couple of companies that carry it and I had to order it online. But it was DEFINITELY worth it! So much better than garfava flour!

You must follow Julie's recipe precisely, and when she says cover it with a towel as it rises, I find that I have to remove the towel just before the dough rises high enough to reach it, or it will stick to the towel and will fall when the towel is peeled off. When she says it will resemble too-thick cake batter, that's exactly what it looks like.

Let it rise in a warm, switched-off oven, then leave it in the oven while the oven is pre-heating to avoid causing the bread to fall (it's very sensitive to being moved/bumped/jostled).

JoAnn

One common theme that strikes me as I read stories in so many threads on this forum is that healing is non-linear; we get a little better, we get a little worse, we get better again....the "rollercoaster ride" that Del was talking about. But in general, there seems to be progress in the positive direction, even if it is slow.

I guess that all of us would probably agree that even if just ONE of our fibro symptoms diminished or went away, the gluten free diet would still be totally worth it! I started this poll because I wanted to find out more about what other people on this forum with fibromyalgia were experiencing....thanks to those who have voted so far (and please feel free to vote if you haven't done so yet!!), and thanks to Del and Amber for sharing details!

This really helps me to feel I'm not alone, and that there is hope for significant improvement in the future.

A Happy (and Healthy) New Year to all!

JoAnn

Hi, we're having a pancake breakfast fund-raiser for an event and would like to offer gluten free pancakes, as many folks we know are gluten intolerant. We'd like to cut down on our costs, ie, we are a non-profit and we'll buy things in bulk (almond flour may be expensive, though we already have some other ingredients already, like xanthan gum). Does anyone know a delicious recipe? I often make my own, but I don't actually know a recipe per se.

Last year, they ended up a tad rubbery and not as delicious as they could be ... in my opinion ... so any help would be appreciated!

I have to second the suggestion of the previous poster....Pamela's Baking Mix makes the best gluten free pancakes my family has ever had! My kids can't get enough of them! It would probably be the most convenient way to go, too.

I've been gluten free for several weeks now and notice that some of my symptoms (such as brain fog and vertigo) are MUCH improved, but others (chronic fatigue, back and leg pain, leg stiffness, difficulty standing & walking) seem to be worse. I have fibromyalgia (among many other health issues) and that's what I attribute most of those symptoms to.

Of course, I've been glutened a couple of times since going gluten free, because my house is still not 100% gluten free. But I've tried SO hard to be careful; I won't touch the gluten-y foods my husband and kids eat. I tell DH he's in charge of feeding the kids gluten.

I've read that many people on this site have had their fibro go into remission after going gluten free. I'm feeling a bit frustrated, even though I know that it can take literally YEARS to improve significantly. But I have never been very patient in situations like this!

P.S. As usual, your menu is great! Everything sounds delicious!

What do you stuff the mushrooms with?

JoAnn

Honey Baked is NOT gluten free, at least not last time I checked).

Hi RissaRoo,

I thought I read somewhere in this forum that Honey Baked had re-formulated their glaze and that it was now gluten-free? This would be as of 2007....

JoAnn

Ok so years ago I had a sleep study done, and the doc called me... "wonky". Yup, I have really irregular sleep cycles (I didn't even hit every stage of sleep and almost none of the time did I reach them in any kind of order...). They sent me on my way without any idea what to do except deal with it (yeah, doctors rule... ).

FFWD 3 years. I've been gluten-free for over 2 years and things are good. I don't sleep well, but we've adjusted to it. About 2 months ago a new local wine shop opened in our teeny town and I've discovered a new love for wine. I took to drinking 1-2 (4oz) glasses of wine just before bed and I slept like a DREAM (I actually did dream regularly for the first time in years!). I slept through the night (something I haven't done my whole life) and felt probably 10X more rested in the morning and I don't even need to nap or rest every single afternoon. So as a little "challenge" this last 4 days I haven't had a drop. Oh man, I'm exhausted. Back to my old sleep habits. So big is this difference that DH has insisted that I take up wine immediately. And that I never do this again.

Am I totally insane? Am I the only one? I kind of think that as long as I'm not overdoing it and getting plastered every night, what's the harm? Oh man, I need a nap! Gah!

NO! You are NOT insane, nor the only one! I too have developed a habit of drinking a glass or two of wine in the evening to help me sleep better. My sleep problems aren't as extreme as yours, but I don't sleep deeply and I wake up exhausted every morning. This is supposed to be "normal" for people with fibromyalgia though.

The wine does help me sleep more deeply, and I don't wake up as frequently during the night which definitely helps my daytime energy levels.

The problem with wine (for me) is that I have autoimmune hepatitis; my immune system has damaged my liver. So wine every night is not a good answer for me. My hepatologist said I could have wine twice a week, but he would definitely frown on imbibing vino every night. DH is not happy with it either; he's worried about my liver.

I've also read the studies that say that women shouldn't drink more than one small glass of wine per day, if that much. But, of course, because of the liver issues, I have to be careful about taking medications to help me sleep.

I don't have any answers for you, but wanted to reassure you that you are not alone!

Take care,

JoAnn

Welcome to the forum!

2. What about the headaches? Today I ate a piece of pizza and about 1 hour later had the uneasy stomach and a raging headache, which I still have Advil did not work today.

Yes, usually my first symptom when I've ingested gluten is a migraine headache, sometimes with vertigo. The gastric symptoms follow later on. But everybody is different; some people only have gastrointestinal symptoms, others have all sorts of neurological symptoms or even skin rashes (dermatitis herpatiformis).

3. What tests should I ask for?

Here is the list of blood tests I took to my doctor (got the list from this forum):

Total IgA - this measures your body's ability to make IgA

ttG-IgA - very specific to celiac disease and is an intestinal tissue antibody

EMA - IgA - same as above pretty much

AGA-IgA - antigliadin IgA antibodies

AGA-IgG - antigliadin IgG antibodies

Your doctor will probably want to do an intestinal biopsy also; this can help with the diagnosis as well as allowing him/her to "stage" the amount of damage that's been done to your intestines.

4. I am pretty small and have had difficulty gaining weight for a few years (weird because I thought hypothyroidism caused weight gain). I am 5'2" and weigh between 95 and 100 lbs. It fluctuates. However, I have always been small and come to think of it have always had headaches. Since 2nd grade. Anyway, is this something that you have since birth or does it suddenly manifest later in life? Until recently these symptoms didn't seem connected.

Difficulty in gaining weight is a classic celiac symptom.

5. If this is in fact Celiac or a gluten intolerance, will a gluten free diet "cure" this and allow the intestines to improve over time?

In general a gluten free diet should allow your intestines to heal and diminish or eliminate other symptoms, even allowing other autoimmune diseases to go into remission. But it can take weeks, months, or even years to feel completely "normal", from what others have said here in this forum. I've been gluten free for a month now, and I notice that several of my symptoms have gotten much better, while others have not improved at all (yet).

In any case, I hope you feel better soon!

JoAnn

Before diagnosis I had terrible leg or foot cramps all the time. Since being gluten-free for going on my 3rd week I've been free of the cramps. I just chalked it up to one more symptom of celiacs. But last night I was up most of the night with those bad cramps coming and going all night. Does anyone else have this problem and it not related to celiacs at all?

I was having horrible leg and foot cramps; sometimes they would occur when I was walking and I thought that I might fall! I thought they were due to my fibromyalgia, but I have 6 diagnosed autoimmune diseases as well, including celiac disease. I think that the symptoms from a lot of these ailments tend to overlap, so I'm not certain which of my illnesses really causes the cramping.

But I was told that prednisone can leach potassium from your body, and that cramps can be caused by a lack of potassium. I started eating foods rich in potassium, such as dried apricots, and that did seem to help a lot. I've been gluten free for one month now and that seems to have helped too. I haven't been having leg/foot cramps for at least 3 weeks!

Good luck!

JoAnn

No they haven't checked the liver. why do you ask?

I have 6 different autoimmune diseases, including autoimmune hepatitis (AIH), which of course means that my immune system is trying to kill my liver; right before I was diagnosed with AIH my symptoms included:

upper abdominal pain, twinges around the liver region

bloating/swelling in upper abdomen

exhaustion

brain fog

pale stool

Many of these symptoms overlap with other medical problems I have, such as fibromyalgia and celiac disease, but pale stool is a classic sign that the liver is not well. You may want to ask your doctor to run a liver panel.

Just a suggestion of course; I hope that there's nothing wrong with your liver at all!

Take care,

JoAnn

Could it be that he is allergic to the Soy milk???

For lunch he had a grilled cheese sandwich on gluten free bread.(about 1/2 hour before his nap) Now, the doc said to me that I can't cut dairy out of his diet, he told me just to cut the milk out. Could this be from the cheese?? or the soy??

I am SO frustrated with the doc & this whole situation!!! Can anyone offer some advice of what I should be doing now?? I was SO super happy that I thought the gluten free diet was the answer but now Im not so sure....but then why did he have his 1st solid poop of his life today?? COul he be allergic to soy & be a celiac?? or maybe he is allergic to dairy? Do you think I should be insisting on an allergy test?? TIA for any help

My daughter is allergic to both dairy and soy; we don't allow her to have cheese or any dairy products. She drinks rice milk and does well on it. You do have to read labels with rice milk to make sure it's gluten free (Rice Dream is not gluten-free but Trader Joe's rice milk is).

You may want to try what the previous posters said: no gluten, dairy, soy, or sugar.

Good luck!

JoAnn

I'm A- and recently diagnosed with celiac disease.

Symptoms can come and go when you're eating gluten, but if you have celiac disease, the gluten will cause damage to your intestines regardless of whether you have symptoms or not. As Fiddle-Faddle said, it does sound like you may have more than one thing going on.

Just out of curiosity, have you had your liver functions tested lately? If so, what were your AST and ALT numbers?

Feel better soon!

JoAnn

With regards to my job, I made certain to sign up for FMLA (Family Medical Leave Act) benefits through the Human Resources department where I work as soon as I began having serious medical issues earlier this year. That way, legally, my employer cannot hold time taken off for doctor's visits, etc., against me.

But I know that everyone has noticed that I'm ill, that I sometimes work from home (my supervisor allows me to do so once or twice a week); I don't know yet what impact this will have on the long term status of my job. I do worry about it.

I've had a few autoimmune issues for most of my life (Hashimoto's thyroiditis, asthma, psoriasis), but several strange symptoms (difficulty walking, peripheral neuropathy, blurry vision, brain fog, etc. etc.) developed over the past couple of years and I was eventually diagnosed with autoimmune hepatitis, fibromyalgia, and rheumatoid arthritis this past summer. By the time I was diagnosed with celiac disease (this month!), I was in a wheelchair.

The fact that I've had gastric problems and "IBS" since I was a child indicates to me that I've had celiac disease longer than any of the other autoimmune issues. This seems consistent with the following medical journal article by Fasano, who says that celiac disease can be the initial problem that literally "opens the door" for other autoimmune diseases to develop: Open Original Shared Link

Surprisingly, my husband and mother have both been VERY upset with me for being in the wheelchair. They seem to feel that I'm "giving up". It didn't seem to matter to them that I can no longer walk for more than a few yards at a time without excruciating pain; I should just "suck it up" and keep trying! Lately my husband has started to become a bit more understanding, and my mother no longer brings up the subject because it starts fights....but I did think at one point my husband was going to leave me.

Fortunately, the gluten free diet has not bothered my husband; I "sold" it to him using other peoples' testimonies from this forum about how they no longer have fibro or RA symptoms. I know that he's hoping that all of my other autoimmune diseases and issues will magically go into remission now and that I will be able to get out of the chair. But I suppose I'm afraid of what will happen to our marriage if I *don't* improve enough to no longer need the wheelchair!

It's sad; I was really depressed after reading many of the earlier posts in this topic. The traditional marriage vows say "in sickness and in health", don't they?

JoAnn

I had an appointment with the GI today and was put on a gluten-free diet. Even though the tests came out negative, my symptoms line up too much with Celiac, so I'm going to try the diet and see how it works. This is going to be hard, especially the week of Christmas, but I'm so ready to start feeling better that I hope this is it!

Welcome!

I know what you mean...I went gluten free right before THANKSGIVING!

But one great thing about this forum is that people share recipes for gluten free *everything* so, with the help of Whole Foods Market, I was able to prepare gluten free pies, stuffing, gravy, etc., and my family thought it all tasted just as good as the "regular" recipes, if not better!

By the way, you may start to feel better right away, but if not, don't get discouraged because it can take a while for your body to heal. Some people report that it literally took them 2 years to feel "normal" again. I figure that following the gluten free diet is DEFINITELY worth it if I can feel normal again, even if it takes years to get there. Some of my symptoms (neurological and gastric) started to get better right away, although they still come and go, while other symptoms have not improved significantly (yet). But I've only been doing this for less than a month now.

Good luck!

JoAnn

I'm so sorry to hear about your daughter's illness.

The only pediatric celiac specialist I know of in Southern CA works in clinics at both Children's Hospital of Los Angeles and Women and Children's Hospital at County USC Medical Center. Her name is Dr. Michelle Pietzak.

HOWEVER, a quick Google search revealed eight gastroenterologists at Children's Hospital of Orange County:

Agran, Phyllis F

Grant, Kenneth E

Idries, Shaheen I

Katz, Mitchell H

Steinmetz, Barry A

Tran, Robert

Vaquero Solans, Cecilia

Younes, Bassam S

Could you perhaps call the gastroenterology department at CHOC and ask them to help you find the appropriate doctor? The hospital is located in the City of Orange, and the main number is (714) 997-3000. Even if no one there actually specializes in celiac disease, they must know of doctors who do.

Good luck!

JoAnn