• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

So Frustrated With Doctors!
0

13 posts in this topic

I have had just about every test the doctor can think of. My IgG was positive everything else negative. I had the biopsy which he hesitated on, went back and forth a bit then said no, not celiac. So now I have a CT scan which shows uterine fibroids. Now I am having an ultrasound to see if this is causing my pelic pain. My gyno says no, fibroids are common and this isn't causing my GI upset but I may have an infection so she puts me on anitbiotics. Ok after a year of being so miserable and constant cramping and diarrhea and pain I am fed up. So I call the GI and ask if I can be referred to a dietitian to help me heal. The nurse practitioner gets on the phone and I am "borderline" celiac and the dietitians in this area don't treat Celiacs appropriately. Celiac? I thought I wasn't celiac. No I am borderline. As far as I know you are or you aren't. So they are giving me a referral for celiac. So now what. My husband is convinced I have Celiac and tells me to start the diet. Well, but what if it is an infection, how will I know for sure? If I start the diet now and feel better how will I know if it is the diet or the anitbiotics? Could it be the fibroid? Am I just totally messed up and it is all of the above! I am just running in circles with no definitive answers and sick of trying to figure this out by myself.

Sorry I am ranting but I guess it helps. Thanks for listening. BTW all my symptoms point to celiac.

0

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:

I'm sure you will get more answers from neat people here, soon! I have learned much from other folks here, and at other gluten intolerance forums.

I agree with your hubby: I recommend that you try going gluten-free for one month. The "easiest" way to start, is to buy whole foods, foods that are not processed in any way. For example, meats, fish, fowl, etc., raw fruits, raw veggies, nuts, seeds, olive oil, and sweeteners such as honey, ground dates, ground raisins, etc. (not too much).

I recommend that you use only brown rice, as a gluten-free grain. This is because corn, although gluten-free, is not tolerated well by many people. Also, avoid soy (many are intolerant of soy).

Avoid the glutenous grains: wheat, rye, triticale (a hybrid of wheat & rye), and barley. Oats may have gluten from processing plants, and many gluten-intolerant people don't tolerate oats. Buckwheat may be contaminated with gluten at processing plants, and many are allergic to buckwheat.

There are "sneaky" forms of glutenous foods, that you also would need to avoid, such as spelt (a type of wheat), kamut (a type of wheat), semolina (wheat), farina (wheat), wheatina (wheat), "starch" (could be glutenous), "grain alcohol" (could be glutenous), "grain vinegar" (could be glutenous), pasta (avoid if wheat pasta--but, there are excellent brown rice pastas--gluten-free & delicious, like made by "Tinkyada"), "cereals" (if made from wheat, rye, barley, oats, buckwheat), "bulghur" (wheat), teff, sorghum, (might have gluten that may not be detectable in available testing), quinoi, amaranth (may or may not agree with gluten intolerant people).

Also, since you've had antibiotics, you might now have a yeast (Candida albicans) infection.

Have you taken any probiotics, to help cure any possible yeast problem? I also recommend completely avoiding internal tampons, because these INCUBATE YEAST CELLS, and make it impossible to fully cure yeast infections! (I learned this, many years ago--when I had to go back to the dreaded..."napkins")

I recommend that you take "probiotics" that are both gluten-free, and, free of cow's milk. Many people who are gluten intolerant, also have problems with cow's milk. The problems may be:

1) lactose (milk-sugar) intolerance. This is easy to deal with, by taking lactase enzymes (like "Lactaid" pills or drops, sold over the counter).

2) intolerance to certain proteins in cow's milk, such as CASEIN, &/or WHEY, etc.

Avoiding cow's milk for a month can be helpful, in dealing with both lactose intolerance, and with casein intolerance, etc. Goat's milk has almost no casein in it, which may explain why some people do better with goat's milk than with cow's milk.

For milk substitutes, you can try making your own "rice mylk" or "almond mylk".

Place a handful of cooked (organic) brown rice (or raw, unsalted, organic almonds) in a blender. Add an 8 ounce glassful of well water (or spring water). Blenderize. Strain several times. Store in refrigerator.

Another thing about probiotics: Some contain FOS's (fructo-oligo-saccharides), which are supposed to feed the good bacteria (probiotics). The problem is, that sometimes the FOS's also feed bad bacteria, causing stomach bloating, diarrhea, etc. I suggest avoiding FOS's. The only probiotic I've seen, so far, that appears to be both gluten-free and free of cow's milk, is Ethical Nutrients "Dairy-Free Maxi Bifidus", sold at good health food stores (see refrigerated section).

I recommend that you start to keep a total food diary, for a week or 2, including day, date, times. Include all foods, snacks, beverages, medications, etc. This can help you figure out what foods you may be intolerant of.

There are other hidden sources of gluten, such as previously used cast iron cookware, previously used wooden cutting boards, wooden spoons, etc.

Some envelope glues contain gluten! Some medications contain gluten!

Also, you can send a stool sample to EnteroLab, which is run by Dr. Kenneth Fine, MD, a well credentialed gastroenterologist who himself is gluten intolerant. You don't have to send the stool sample in, immediately, because antibodies to gluten (in the stool) last for at least a month after starting to go gluten-free. See http://www.finerhealth.com for info about Dr. Fine's EnteroLab stool testing.

You may also want to read Dr. Fine's "talk" he gave to a Celiac group, about how there are many kinds of gluten intolerance. Celiac Disease is one kind. There are other kinds, too. I think his talk is called "Before the Villi Are Gone". It's in his EnteroLab website.

Maybe others will have advice about the fibroids, etc.

It's not easy to sort out everything. But, with help from folks here, and better docs, I think you will be able to figure it all out! Don't give up! :-)

Carol

http://cantbreathesuspectvcd.com

0

Share this post


Link to post
Share on other sites

To j9n:

I too had uterine fibroids as large as a 3 month pregnancy. When they removed them, the surgeon told me that my uterus adhesions and was attached to my intestines. Furthermore, the intestines were looped wrong and were adhesed to one another. After the removal of the fibroids, I felt better and can say that I did have intestinal problems due to all of those adhesions before the surgery removed them. I found after the surgery that I was less constipated (I do not have celiac, my husband does). The uterus was so distended and was pressing on other internal organs which caused frequent urination and constipation (which in turn caused the intestinal problems). So, yes in my opinion as the patient, I can say that there could be a small connection to intestinal discomfort and fibroids. This is from experience.

Debmidge

0

Share this post


Link to post
Share on other sites

P.S. Don't let a doctor tell you how you should feel. If you improve on the gluten free diet then you can assume that you have at the least a sensitivity to wheat or gluten.

Years ago a well respected gastro here in NJ from a large and famous medical group told me that my husband didn't have a malabsorption problem. Through his bifocaled eyes he looked down at me and chided me for this suggestion. Well guess what! My husband was suffering for 15 years from celiac disease unbeknownst to us! This doctor had the arrogance to tell me I was wrong in my assumption of malabsorption. Wouldn't even consider it as a possibility My observation of the patient: he wasn't thriving, losing more weight, loss of muscle, skin color was pale, intestinal disruptions, loose stool, gas, etc. and I am a lay person! 10 years later he was finally diagnosed properly by a new gastro at a different medical group.

So don't ignore the doctor entirely, but in this case you can eat healthy and be gluten free to judge for yourself if your health improves. In this case, following your own judgment will not harm you. I would say that if you are on a medication, by all means, stay on it unless the doctor tells you otherwise. For example, you might have celiac with IBS and need Zelnorm for the IBS. Only the doctor can make a medical call.

0

Share this post


Link to post
Share on other sites

If you are "borderline" celiac, then you have celiac. Period. Go gluten-free.

Please don't be intimidated by the post telling you to also avoid dairy, soy, corn, buckwheat etc. Some people do also have some of these intolerances but the majority do not. The only thing I had to avoid was gluten. But the basic advice to eat simply at first is good. Start with fresh meat, vegetables, and fruit. And the advice to take a probiotic is also good. One that is recommended by celiac doctor Cynthia Rudert is Culturelle because it's OTC, gluten-free, and doesn't need refrigeration.

richard

0

Share this post


Link to post
Share on other sites
Ads by Google:


Thanks for the replies. I still haven't heard from my doctor regarding a dietitian. I guess they think its ok to be sick and miserable. The antibiotics are helping although my skin is getting really itchy. I am ready to give it a try. I guess I have to talk myself into it although most the foods I love are gluten free (I think). I just want to stop running in circles and yo-yoing between healthy and sick. I do know I have chronic gastritis, hiatal hernia and GERD and now the fibroids. Oh and a red rash on my legs that will not go away. I have to be pro-active instead of reactive!

0

Share this post


Link to post
Share on other sites

my own two bits on the dietician issue....I found that by the time I actually got in to see the dietician, I knew more about gluten-free diets than she did!...spend some time on this site (see the main site index, it's easier to get the facts) get a couple of Bette Hageman's cookbooks and learn as you go. come back here for support. Good luck!

0

Share this post


Link to post
Share on other sites

Ok I called back the doctors office and asked about the referral. She pulled my chart and said that I was borderline celiac. I asked what this meant. She said I did not have celiac but was borderline celiac. So I am going to take this as I would a "borderline diabetic". I don't have severe damage but do need to modify my diet. I called the dietitian they gave me and left a message. Evidentally she specializes in diabetes and kidney disease. Hum, I am getting a strong feeling I am on my own.

0

Share this post


Link to post
Share on other sites

Sorry, but saying you are "borderline celiac" is like saying you are a little bit pregnant!

0

Share this post


Link to post
Share on other sites

Oh, and by the way, you re NOT on your own...you have this maessage board! Keep asking questions! Everyone will help you!

0

Share this post


Link to post
Share on other sites

Thanks, yes I know this is probably my best source. I did talk to a dietitian at the hospital who basically said the same thing. There is no such thing as borderline. She is going to help me with an elimination diet. I have my new palm pilot and my diet and exercise assistant program so I am all set. I bought rice cakes (I actually really like them instead of crackers) and since we just remodeled our kitchen I bought alot of neat cooking supplies including a pasta maker. I checked my probiotics I bought from the health food store and it is gluten free so I am ok there. I do really love to cook and have a ton of recipes and magazines. Bon Appetite actually seems to have alot of safe recipes

0

Share this post


Link to post
Share on other sites

Good for you! I highly recommend Betty Hagman's "Gluten Gourmet" series of cookbooks. Really tasty recipes.

0

Share this post


Link to post
Share on other sites

If you love to cook and love your kitchen, you are ahead of the game! It is easiest to be gluten-free when you make it yourself. It will get easier, and you do have us for help! We also need you to help us with our questions, so please do not be a stranger!

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      106,112
    • Total Posts
      928,997
  • Member Statistics

    • Total Members
      63,516
    • Most Online
      3,093

    Newest Member
    Ophelia
    Joined
  • Popular Now

  • Topics

  • Posts

    • Dermatitis Herpetiformis  can manifest itself in lesions anywhere, not just elbows and knees.  I have it and although gluten free, I still have severe itching and little bumps that itch.  I don't have the lesions any more, but itching can drive a person mad.  the bumps can be on buttocks, shoulders, etc.  Dapsone is the standard treatment, if you are not allergic.  I also use topical prescription creams.  I take 2 Zyrtec a day and benedryl at night.  Benedril spray helps with temporary relief.  Also am on hydroxyzine and doxepin.  Sometimes steroids like prednisone help, but can ruin ones blood sugar counts.  I use Grandma's Baking Soda soap.  Straw may certainly be a factor.  I must be coming in contact with a trigger of some kind even though I'm very careful about my diet.  Change your dermatologist and get a specialist in DH.  I went for years with all kinds of stomach and bowel issues and was 69 years old before being correctly diagnosed.  Don't let anyone tell you it's your imagination!
    • I can not help you except to offer some emotional support.  You are not crazy!  You can get glutened on a farm.  Here is a study: http://www.nejm.org/doi/full/10.1056/NEJMc063112#t=article This topic has come up before: Hugs!      
    • I know I got glutened after handling some straw last year helping out decorating at the farmers market then going to eat something without washing my hands. I later learned it was wheat straw, some of them still had the heads on them and everything. Gave that area wide walk around after that, I did not have much issues with inhalation with it. But if your there with a thrasher running, down wind during the harvest.......I imagine it might be hell if your super sensitive. If you get skin reactions that easily from it I guess taking a vacation during harvest? Try staying indoors, dust mask, long sleeves and pants hope for the best.......I am just throwing some ideas out there. Maybe someone can help a bit more.
    • Hi i haven't been diagnosed yet. Bloodwork was negative (on gluten free diet) and I'm awaiting skin biopsy results  I have DH on the front of my thighs. The dermatologist says DH only happens on knees and elbows therefore I don't have it. It's itchy as hell, blisters, purple scans as It heals, migrates around but always in that spot on both legs. It takes 5 days after exposure to gluten for it to show up and it can last for a month. I throw up 24 hours after exposure, GI symptoms 36 hours after that last for about a week. I also will have a panic attack somewhere in that time.  I've been gluten free since December. Rash went away after a week of no gluten but came back after a few months (I ate a rice Crispie square)  My problem is this. I live in a farming community. I just filled my dogs kennel with straw not even THINKING about gluten. This was last week. All symptoms happened in order and now the DH is back. How the hell am I going to survive? I can stop using it on my property but what if it's in the air during Harvest time? I thought I had a mental handle on this but I'm devastated and terrified. My husband doubts it's possible the straw Glutened me but I know it did. What if this summer the air literally kills me? Has anyone dealt with this? I feel like I'm going insane, I'm so obsessed with this and now I'm itchy and sick too 😥 
    • It's good to be aware isn't it. Medical research has verified airborne particles can be problematic and hopefully there will be greater refinement in the research to establish greater understanding over time.  The site manager at the construction site informed me that my symptoms starting coincided with when the work with cement started. As I got sick from plaster in my house I am thinking this could be related. I was honest with my doctor about my symptoms and said I thought it had something to do with working next to a construction site. He said it sounds like an allergice response and said that it could be related to gluten symptoms but that these things are poorly understood.  The cement work nearest my window is finishing this week and I'm due to return to my job. Relief! X 
  • Upcoming Events