Frustrated/Have Questions

[rmonroes]

I was just diagnosed with CD 6 weeks ago, confirmed with biopsy of small intestine. I have type I diabetes, and have had it for 23 years. I've read that somewhere b/t 7-10% of type I diabetics also have CD. I've been symptomatic of CD for over 15 years. Been anemic, skinny, and exhausted for years. Also have the following, which are ALL auto-immune: hypothyroid disease, necrobiosis diabeticorum, Sjogren's Syndrome, and as of today osteopenia. I am SO angry that no one ever tested me for celiac and now I have bone loss, and I am only 35 years old. I don't mind changing my diet b/c my energy has really picked up since I went GF 6 weeks ago. However, I cannot believe how many years I was told to go on the BRAT diet, or that I just had a sensitive system, or that it was stress-induced. Has anyone taken action legally against this type of medical negligence? I love my endocrinologist but he really missed the boat on this one. My PCP too. Also, I have systemic joint inflammation, worst in shoulders and knees and wrists. Has anyone else had this and seen it diappear after going GF? No one has been able to explain why all my joints have tendonitis and inflammation. I do not have lupus or RA. Sorry for the rambling. Rebecca

[cruelshoes]

Rebecca - Wish I could say welcome to the club, but I'm pretty sure you'd rather belong to another one. I have definitely struggled with some of the same feelings you are having since I was diagnosed in August. It took almost dying of malnutrition for the doctors to do anything for me.

I developed Osteopenia in my early twenties and had osteoporosis by the time I was 30 (I am 34 now). I had 2 horrible pregnancies, almost losing both babies before my celiac diagnosis. Most people here will have similar stories of years of symptoms before some doctor pulled his head out of his butt to diagnose Celiac.

I don't fault the doctors. I honestly do not believe that they get much training in Celiac Disease. I have talked to many doctors and nurses over the last few months. When I tell them that I have Celiac, some of them blink at me and ask "what's that?" It was thought for many years that CD was rare in the US, but now studies are proving that our rates are comparable to European countries.

You have a great chance now to live a healthy life. I feel better in the last 4 months GF than I did in the 15 years before that. We can be very helpful by educating every doctor that we come into contact with about CD and its symptoms. Maybe we can help some other poor soul from suffering for years before getting a diagnosis.

Welcome to the forum. THis is a very positive place, and you can always get answers to your questions here.
_________________
-Colleen
Dx 8/05 via bloodwork/biopsy
10-YO son Dx 11/05 via bloodwork/biopsy
Daughters (12 and 2) have neg. bloodwork

A woman is like a tea bag-you never know how strong she is until she gets in hot water. - Eleanor Roosevelt

[mo-mo]

I was actually just diagnosed a few weeks ago. My sister (who lives in another state) went to get tested, and her doctors had NEVER heard of it. This boggles my mind, because apparantly it is a very common disease! I guess I should feel lucky that mine was discovered! I had no idea that the ramifications of eating glutens with celiac could be so severe. I am just anemic and malabsorbant, but I feel fairly good otherwise. I am so sorry to hear that rmonroes has been so sick for so long at such a young age. I am angry for you!

[Jeannine1]

Rebecca, welcome to the group. Glad you found this forum.

So sorry you have all those problems at 35. But, you at least you are young enough that you will probably get much better quicker.

Yes, the medical community is failing a lot of people like you out there. But, they are having to get with it because the internet is educating a lot of people. You will learn more from the internet forums than any of the doctors know. As newbies to the GF lifestyle (me 1 1/2 years) I think it is our responsibility to tell our friends & co-workers & family about this disease. It really helps get the word out. People used to not say anything, like they did if someone in the family had cancer.

I guess you do know that it is genetic and that your family should be tested. & that you can have CD with no symptoms. But, that you also have to be careful because a lot of the labs do not know how to run the tests correctly or even do the right tests - there are 4 blood tests - to be run they are lsited everywhere - I do not know them from memory. So if a family member has symptoms & gets a negative to the tests, the only to make for sure is to go GF for a few months - usually they will feel better right away.

Thank goodness the docs diagnosed you. Everytime I hear of someone getting a diagnosis from a doc, I have hope that this is finally getting the attention it deserves. & yes the statistics now say that it is 1 in 133 people in the U.S. that have CD - but those of us that have it & see it in our families know that is only the tip of the CD iceberg. some people think that 30 ot 40% of the population have the genes for CD or gluten intolerance. Those English & Scots Irish flourished in the U.S.
It is the people that are misdiagnosed with MS that I feel for. I have a friend that has a friend with MS & from her symptoms I feel that it is CD but you know they think the doctors are the next thing to Gods & what could I possibly know. Also, you will find that a lot of people will refuse to get tested because they say they are not going to change their diet. My son for one & others in my family - it is all too common.

Keep us posted. & Yes we fell for you, but glad you are here now.
Hugs

[Jeannine1]

Forgot to say, that yes I think your joint pain will get better. Joint pain is a common CD problem that goes away on a GF diet.

Check out information on cross contamination. Is your kitchen GF?

watch out for the common CD problems with dairy, soy, & corn. You might not have any problems with these & if you do it might go away once you heal.

read all the forums you can!!!! Oh, & look up a local support group in your area - they are all over & a great source for local restaurant information etc. Let us know if you cannot find one in your area & we will find it for you.

[rmonroes]

Thanks you so much for the responses. I have tears in my eyes. I am so thankful for hearing from other people who also have CD. I have been doing this all on my own and it's pretty lonely. My husband and son, age 3, are still eating gluten, but I have half of the fridge and cabinets labeled gluten free. We have different pb and jelly and different butter so that when we make toast or sandwiches they don't get their evil glutenous crumbs in my domain! My son has been tested and blood test was negative. (yay!) My mom got tested and she is negative, and I just made my dad and sister make an appt to get tested. As for support groups I called twice about a support group for CD in my area (Worcester, Massachusetts) and no one ever returned my call. There is supposedly one at the Fallon Clinic but Fallon has numerous sites so without a return phonecall I can't find anyone. I ran into a mother of a celiac in the Whole Foods market near here, and I was so HAPPY to meet her I hugged her! She was a little taken aback! She told me about McDonald's french fries being okay. That made me laugh. I've been a health food person my whole life and now french fries at McD's are a "good choice." I am very encouraged about my joint pain, as I was trying to accept that I would be in chronic pain the rest of my life. Now, I have some hope I might be able to get rid of this joint inflammation. Does anyone out there save their receipts from foo shopping and then deduct the difference as a medical expense when doing taxes? This seems like such a big task that I have not undertaken it, since also feeling overwhelmed by the diet. As of Jan 1st though, maybe it would make sense to take this on, as the GF food is so expensive. Anyone know of a way to do this easily? Thanks again for the replies. I really appreciate the encouragement. Rebecca

[Demo]

Rebecca, If you like to eat healthy eat fresh fruit and produce untill your heart is content. We cook alot of chickens and turkey. Just be careful on what you purchase, even those choices could have gluten. We buy Purdue chickens and Honeysuckle turkey. There are also some really good choices of pastas out there. If you live near a Whole Foods you are really in luck. They have a wonderful selection of GF products. Also try Wal-Mart. They label alot of there own product line products as GF on the label itself.

[Noatak]

Hello Rebecca!
After reading your post, I was happy to see we live near one another so maybe I could help you a bit with your CD. I was diagnosed in April of this year and I must say, your situation mirrors mine. I didn't become really run down from this until about 2 years ago and because I didn't know what the problem was, and the damn doctor's weren't helping much either, I hit the skids in January of this year. As it turns out, I figured it out myself and then went to the doctor and insisted on the bloodtest. I was flamingly positive for CD so started the diet right away. I didn't feel the need for a biopsy as I KNEW I had it and had villi damage as I was anemic, skinny and lacking energy like yourself. I also had some joint pain in my fingers which totally went away after going GF, so do not despair. It may take awhile for your body to get back on track but you will, if you follow the diet.

I understand your anger perfectly and do not have a high opinion of doctor's. At one point, I was told my stomach problems were in my head and I should seek psychiatric counseling! Or they try to ply you with medication to suppress symptoms so you will shut up and go away. How arrogant a profession is the AMA that they discount European medical knowledge when so many people here are of European descent! It boggles the mind! However, the anger does not do a Celiac good so I ditched it when my suspicions were confirmed with the blood test. Yes, I may have some other problems from being an undiagnosed Celiac for so long but REFUSE to let that get me down. I have friends with far more serious medical problems so that keeps things in perspective for me.

The tax question is a good one and I will let you know what my accountant says about deducting GF food. I have been busy trying to get my health back this year and feel sooooooo much better now. I have even gained 5 pounds since April, which is a double edged sword! I have filled out a bit although still thin but it can do a number on your head too. At 46 years old, I don't want to keep going and then have a weight problem. So I am now doing something I never had to do before....watch my weight somewhat. I eat extremely healthy as a Celiac has no choice but am keeping an eye on going overboard. Now I know how most other people feel about weight issues! : )

I live in Marlborough so we are very close...maybe we could meet up for coffee somewhere ( I thank God often that coffee is GF!) in the New Year and maybe start our own Celiac support group! What do you think? I am married for 22 years with no children and 1 beloved dog!

[Noatak]

One more thing Rebecca.....I forgot to mention a few goodies for you!
Get a subscription to "Living Without" magazine. It is available at Whole Foods market and is fabulous for information and contacts for GF everything.

Saving the best for last......check out, www.thedailycount.com. It is in Nashua, NH and they have coffee and GF pastries!!!!!! Just discovered this little gem recently and haven't been there yet but it's probaby one of the only places a Celiac can go to and sit and eat a pastry with their coffee. Maybe we could meet there sometime and do what everyone else in life can do! : )
People who have no food issues just don't appreciate these little pleasures in life!

[aklap]

Hi Rebbeca,

Welcome to the board!! I see everyone has been hard at work hehehe

It's ashame the people have to suffer for far too long with this! I am sorry you have had to go thru it. The average time til diagnsis is 11 years!! That's way too long for damage to occur. Slowly things are changing. Slowly the medical profession is coming around. It's up to us to keep raising awareness of this. I am glad you are out here now...we now have 1 more soldier in the battle.

Now that you know, you can get on the road to feeling better! We can help with that!!

You should notices an improvement in your joint pain! You might also consider removal dairy too. That can also cause bone, joint & muscle pain.

I'm sure you've probably seen this already, but check outOur Thread on GF Diet Boot Camp. This covers a lot of the basics!!

As for the the tax question? Yes we are allowed to deduct THE DIFFERENCE in the cost of GF foods. So a box of pasta costs 1.00, ours costs 3.00...we can deduct 2.00. For us, we'd have to make sure it's over and above the 5,000 standard deducation we get as filing married. Check with your tax preparer or accountant tho.

I have started to keep track of this...but I am not that detailed enough to keep it up. It is quite a task!!

I wish you well in your GF Journey, if there's anything we can do to help...don't be afraid to ask!!!!
_________________
Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

[Joanjet]

Rmonroes, Glad to hear you have been finally diagnosed. You mentioned how you were separating your food from the rest of the family. It might be a good idea use a different toaster. The gluten free bread picks up crumbs from the toaster used by all. I developed dermatitis Herpetiformis and it has cleared up since using my own toaster.

[Jeannine1]

Hi Rebecca,
My son lived for a time near where you are!!! I loved visiting there.

Greater Boston Celiac/DH Support Group, Inc. Chapter phone #: 617-262-5422 toll-free: 1-888-4-CELIAC

the above is the chapter information for the Boston area.

Here are a couple more:
Mary Arruda, West Greenwich, RI
401/385-9175

Tanis E. Collard, Attleboro
508/399-6229, csgc@verizon.net

Chaula Hopefisher, Pittsfield
413-499-4380, hopefisher@chaula.com

http://www.csaceliacs.org/chapters2.php
And this is the link for the Celiac Spru Association

Sounds like you might have a GF neighbor, hope you two get to visit.

[rmonroes]

Noatek, I would love to meet for coffee and pastry. I have until Jan 9th before I start a new job, so maybe we could meet sometime b/f then but after the holidays? I just had a catastrophic day yesterday regarding being GF. I licked an envelope out of habit, (rinsed rinsed rinsed) and then went to a playgroup with my son and the host made a chicken and white bean soup and told me there was no gluten in it (we have a mutual friend who has to avoid wheat b/c she is Breastfeeding an infant with allergies so this person was familiar with the label reading) BUT I ate a bowl and then found the broth container in the trash and it had hydrolized wheat protein in it! It was College Inn. So, I had a bad belly last night, and was angry at myself b/c i have not had a speck of gluten until now.(I do have my own toaster.) Swanson broth seems to be gluten free. I got the CSA Gluten Free Product Listing which is sometimes difficult to locate foods in, and I got the Celiac Sprue Guide through the Medicine Cabinet, but both are not very user friendly and seem to just elevate my frustration right now (didn't even list TUMS. Does anyone take Tums?). Can someone tell me the deal with vinegar? I thought ALL except for malt vinegar was okay? What about maltodextrin? I googled it and read that it has no malt despite its name, but then I read something from CSA that said to avoid it/question it. What about mayo? I just bought very expensive organic GF mayo and ketchup but now read that some of these are fine (Heinz) and (Miracle Whip and Hellman's, but list doesn't mention whether low-fat versions are okay, luckily MW is made by Kraft so I can figure it out.) Because of my insulin dependent diabetes I have to be careful about sugar and also fat, and am supposed to get lots of fiber, and very little fat. I was doing this well before the GF diet. I do well with dairy, and need it for my ostepenia. Otherwise I would have to eat so much broccoli! I think I will give the GF diet more time to see if my joints improve more . I love fruits and veggies and I eat chicken and fish so that's all good. I just hate eating anywhere but home sweet home! If CD were my only concern and illness it would be one thing. But keeping track of several others and this is a challenge, but I WILL fid a way. My diabetes is always high maintenence, and I'm on an insulin pump so have to test my blood a lot. I weighed 105 when I was diagnosed with CD about 2 months ago. Now I weigh 115! My doctor said he was pleased with this and not to worry. I am not fitting into my size 2 clothes anymore, so it's a lucky day for GoodWill. Also, has anyone tried Bard's Tale Gluten Free Beer? I love wine but I'd like to have a beer now and then...As always, Thanks for all the responses. This is so great to have people to ask, instead of conflicting info to read and wonder silently. Rebecca

[Noatak]

OK, Rebecca....now you are scaring me! I am also starting to feel the squeeze in my size 2's! I was always 104 lbs. most of my adult life and am up to 108-109 and feel fat. How sick is that? People don't realize though at that size, a small weight gain is gonna be felt. I am happy to have filled out some and feel healthier and more energetic but it can do a number on your head when you all of a sudden start to gain weight! So maybe we can split a pastry when we meet?

I will be busy over the next couple of days with Christmas but next week (Tuesday) I will be in touch and we can plan a meet if you would like. This sounds fun and it will be nice to commisserate with another Celiac. I e-mailed the woman who owns that bakery/store in Nashua and she was kind enough to return my e-mail soi this looks promising! Just bring your wallet when we go as I think they have plenty of goods to choose from. I'm sure you can also find things that will be OK for a Celiac/ Diabetic. I am knowledgable regarding diabetes...my brother got that and I got the Celiac's!

Have a wonderful Christmas full of gluten free goodies and I will be in touch!

Lisa

[aklap]

Hi Rebbeca,

Sorry to hear you got glutened. Starting out is so hard, there are so many things to know and check. This is will get easier. Eating at someones house or eating others food is difficult - unless you trust them explicitly - which is hard to do.

Yes Swanson's Natural Goodness Broth is GF.

As for envelopes...I just saw some info recently that said all glue on envelopes is NOT wheat based. I will find that and post it...

I have not seen the lists that you mentioned, it's too bad they can't organize a bit better. I primaily use the Chicago Mainstream List and Delphi Lists as guides.

I have a post or two around here concerning vinegar and distilled products. Yes any vinegar that is distilled is GF. EXCEPT Malt vinegar.

Maltodextrine...the name is confusing...if it's made in the US it is corn based. If you go to Our Safe and Forbidden Food Ingredients thread and look at the Forbidden list...way down on the bottom, it explains the Maltodextrine thing.

Heinz Ketchup is GF. So is MW & Hellmans. I'd have to check the light versions.

Bard's Beer....I LOVED IT!! It's not available in WI yet. It's in every state around us. All the brewerys in the state must be blocking it...just like the dairy industry blocked margerine back in the 50/60's. I also tried the beer from Ramapo Valley Brewery. To me, it had a sour aftertaste. There is a new GF beer from a microbrewery in Milwaukee (home of Miller) called New Grist. I have not tried it yet. I am trying to find a place that has it. I'm 2 hrs north of Milwaukee.

The weight gain is probably a good thing. It may mean that you are absorbing again!!

Hang in there!! Keep at it. You'll get this figured out yet!
_________________
Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa