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So Frustrated With Doctors!


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12 replies to this topic

#1 j9n

 
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Posted 14 June 2004 - 05:03 PM

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.
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#2 concernedlady

 
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Posted 16 June 2004 - 11:10 PM

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
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#3 debmidge

 
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Posted 17 June 2004 - 02:16 AM

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
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Husband has Celiac Disease and
Husband misdiagnosed for 27 yrs -
The misdiagnosis was: IBS or colitis
Mis-diagnosed from 1977 to 2003 by various gastros including one of the largest,
most prestigious medical groups in northern NJ which constantly advertises themselves as
being the "best." This GI told him it was "all in his head."
Serious Depressive state ensued
Finally Diagnosed with celiac disease in 2003
Other food sensitivities: almost all fruits, vegetables, spices, eggs, nuts, yeast, fried foods, roughage, soy.
Needs to gain back at least 25 lbs. of the 40 lbs pounds he lost - lost a great amout of body fat and muscle
Developed neuropathy in 2005
Now has lymphadema 2006
It is my opinion that his subsequent disorders could have been avoided had he been diagnosed sooner by any of the dozen or so doctors he saw between 1977 to 2003

#4 debmidge

 
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Posted 17 June 2004 - 02:31 AM

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.
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Husband has Celiac Disease and
Husband misdiagnosed for 27 yrs -
The misdiagnosis was: IBS or colitis
Mis-diagnosed from 1977 to 2003 by various gastros including one of the largest,
most prestigious medical groups in northern NJ which constantly advertises themselves as
being the "best." This GI told him it was "all in his head."
Serious Depressive state ensued
Finally Diagnosed with celiac disease in 2003
Other food sensitivities: almost all fruits, vegetables, spices, eggs, nuts, yeast, fried foods, roughage, soy.
Needs to gain back at least 25 lbs. of the 40 lbs pounds he lost - lost a great amout of body fat and muscle
Developed neuropathy in 2005
Now has lymphadema 2006
It is my opinion that his subsequent disorders could have been avoided had he been diagnosed sooner by any of the dozen or so doctors he saw between 1977 to 2003

#5 lovegrov

 
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Posted 17 June 2004 - 06:19 AM

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
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#6 j9n

 
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Posted 17 June 2004 - 06:25 PM

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!
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#7 GFdoc

 
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Posted 17 June 2004 - 06:38 PM

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!
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Sara gluten-free since 9/03

#8 j9n

 
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Posted 18 June 2004 - 12:11 PM

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.
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#9 dana_g

 
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Posted 18 June 2004 - 02:27 PM

Sorry, but saying you are "borderline celiac" is like saying you are a little bit pregnant!
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Gloriously gluten-free--Dana

#10 dana_g

 
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Posted 18 June 2004 - 02:29 PM

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

#11 j9n

 
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Posted 18 June 2004 - 05:48 PM

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
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#12 dana_g

 
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Posted 19 June 2004 - 07:33 AM

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

#13 plantime

 
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Posted 19 June 2004 - 01:37 PM

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!
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Dessa

The Lord bless you and keep you; the Lord make His face shine upon you and be gracious to you." Numbers 6:24-25




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