Question About Doctor's Recommendations

[joerockstar]

Hello folks! This is my first post here after my wife and I came to the conclusion that she has either celiac disease or non-celiac gluten intolerance.

Quick history - my wife has been suffering from various stomach/intestinal problems for over a decade. She's had colonscopies, endoscopies, CAT scans, etc. She's had every diagnosis from hypothyroidism (ruled out), colities (no evidence of irritation in the colon), to the good ol' catch-all IBS. After reading until our eyes fell out, we stumbled upon information about celiac disease. The more we read, the more we realized that this just might be the answer we've been seeking for so many years.

Last Thursday, she started on a gluten-free diet. By the VERY NEXT DAY, she had a TON more energy, her vision seemed less blurry than it had been, and her overall sense of well-being was greatly enhanced. We're thrilled as you can imagine! She used to have to take a nap after work every day, no longer required. She'd been taking Aciphex for stomach acid - not necessary any longer.

To be on the safe side, my wife scheduled an appointment with a gastroenterologist. This was the same guy who gave her the IBS diagnosis so I was skeptical from the start. Earlier this week, her family doctor performed the celiac blood test, which came back negative.

I'd like the forum's opinion on what he is recommending:

1. He dismissed the blood test completely and wouldn't schedule another one.

2. He said "A gluten-free diet is not the best thing for you." and wants her to go BACK ON GLUTEN.

3. Immediately wanted to schedule the full RotoRooter treatment, endoscopy, colonoscopy, etc.

4. Gave her free samples of the latest and greatest fix-everything-but-take-for-the-rest-of-your-life stomach meds (prescription of course)

His statement about gluten-free diet not being the best goes against EVERYTHING I have read, including the fact that people who stay on the diet typically live 7 years longer than the average person! I also read that there are NO treatments for celiac or gluten intolerance beside eating a gluten-free diet, so why is he recommending meds?

I'm skeptical as stated, but my wife wants to make sure there's nothing else seriously wrong. I have convinced her to seek a second opinion thankfully, but was curious what you guys thought about his suggestions. The thought of her going back to gluten after the radical changes she's experienced just breaks my heart. Thanks in advance!

[Skylark]

You need a different doctor, or to get really tough with this one. Any doctor who is so closed minded that he can't LISTEN when a patient says they feel dramatically better after a lifestyle change does not deserve your time and money. He is recommending meds because the ex-beauty pageant winner who is now a pharmaceutical rep visited the office last week and his free pen and printed prescription pad remind him of her. (No, I'm not making this up.)

A gluten-free diet is like any other diet. If you eat gluten-free junk food, it is bad for you. Gluten-free junk food is probably worse than wheat junk food because gluten-free junk food is starchier, lower in fiber, and generally not fortified to save you from bad diet choices. If you eat whole, healthy foods it is as healthy as any sensible dietary choice.

There are people with severe gluten intolerance who show up negative on blood tests. If she agrees to go back for the endoscopy, INSIST on a biopsy for celiac where multiple samples are taken. If he will not biopsy, move on.

The celiac tests are not accurate after someone has been gluten free for a time. It's different from person to person how long it takes the antibodies and damage to go away, but I personally wouldn't pursue testing after more than a month gluten-free. If this doctor won't biopsy quickly and you have to wait to see a different GI, your wife needs to decide whether she is willing to accept a "I'm probably celiac so I'm gluten-free for life" like me or whether she wants to go back to eating gluten and push hard for a non-celiac gluten intolerance diagnosis. Current thinking is that people with non-celiac intolerance can eat what gluten they can tolerate (which still may be no gluten at all).

Other health problems like Crohn's or SIBO can be ruled out gluten-free if your wife wants to pursue care with a different doctor and stay on the diet. Another thing - if she gets well gluten-free there is no need to rule out other problems.

[pattyk]

Listen to the previous reply, you hava a Doctor that has more of a ego than a directive to help his patient. I went through the same thing as your wife. I still have a problem being believed because I have not tested celiac. I am 66 years old and have battled with this since my thirty's. I have been Gluten Free for 3 years and do so much better, unless I slip up, and then you can be sure I know that Gluten is my problem. You might consider dairy too, especially when she is suffering to stay away from other potential alergic foods, dairy especially. Doctors treat you by a diagnosis, that fits into their prescribed treatment. The insurance companys, and the education they recieve does not allow for treating a person as a whole. They are not interested in what root cause of your problems are, just in treating a symptom, so they can perscribe a drug or a test. If they get outside of those rules, or allowed or accepted diagnosis they answer to the insurance company, and their board of decision makers. Their is no diagnosis of Gluten intollerant, only Celiac, so we fall throught the cracks.

[joerockstar]

Thank you for the replies Skylark and PattyK!

To add insult to injury, we looked at the form the gastroenterologist filled out for her tests. This genius DID NOT EVEN CHECK THE BOX TO LOOK FOR CELIAC DISEASE! He checked boxes for diarrhea and IBS, which was what he (mis)diagnosed her with 5 years ago. He even left unchecked abdominal pain and distention, which were her 2 biggest symptoms! Guess his ego won't allow him to be wrong in his original diagnosis.

Wife just returned from new gastroenterologist. What a difference! The guy told her he wouldn't DREAM of telling her to eat gluten again since the diet has helped her so much. They're doing only an endoscopy next week to check for damage, if there's none, stay gluten free and enjoy your life! No meds, no need for colonoscopy since she had one less than 5 years ago, nothing! Gives me faith that there ARE some good ones out there!

[Skylark]

That's wonderful news! I'm so glad you had a better experience with the new doctor. Feel free to make as many posts as you like to ask about the diet if you need help.

[mushroom]

I am so glad you found a doctor who actually has ears, as well as a brain that allows him to hear what the patient is saying and an open mind to interpret it. Treasure him, they are rare You are so right about that other genius - he would never have found celiac if he wasn't looking for it Even if her endoscopy turns out negative, you know what you need to do now - you must feel so much better about everything

[joerockstar]

Thank you Skylark and Mushroom! We're both positively ecstatic at how she's progressing on the diet, it's almost miraculous. She's lost 4 lbs this week already, has had NO stomach distention at all, and hasn't had any stomach acid despite not taking her Aciphex for the last few days. Her energy levels continue to climb, our kids are amazed to have their mom back, and I have the pleasure of getting back the happy, outgoing, energetic woman I fell in love with so many years ago! Fighting back tears of joy as I type this....

I just called and told her to pick out one of those sexy outfits that she hasn't fit into in a while 'cause I'm taking her OUT on the town tonight to celebrate (gluten free of course, lol)!

Thank you all for creating and contributing to this wonderful resource, I'm sure it has saved people's lives both figuratively and physically!

[LDJofDenver]

And, by the way, of course her blood work would come back negative if she has not been eating gluten!

It's scary sometimes, what we have to endure to finally get a diagnosis.

I guess the most important message is to learn to be your own advocate.

[Dr. Keiser]

I'm new to this site but this is a great story! The number of people that go undiagnosed in this country seems criminal. Going gluten free will go a long way to changing both of your lives. If you are still interested in having diagnostic testing run there are different tests that can be very effective.

There is a stool antigen test that can give a result for as many as 6 months after the most recent gluten exposure. We use this one to help confirm how well someone is doing with their diet or if they aren't seeing great results we use this to find hidden exposure.

There is also a new lab that just opened this month called Cyrex that is doing some pretty incredible panels regarding cross contamination and genetic predispositions. I haven't had an opportunity to use it yet, but I will let you know my experience.

With the nature of celiac or gluten sensitivity there is a pretty strong indication that other foods may also be causing similar effects (if the immune system is out of balance there are many different potential sensitivities based on the foods that are being consumed in addition to gluten.) It would probably be very beneficial to start an elimination/provocation diet to help you confirm exactly where you are at. There are many physicians trained to help you from there...just have to find them.

Congrats to you and your wife, i hope you enjoyed your night on the town

[Chiana]

I'm glad your whole family is feeling better and relieved! It's always good to hear that the potential scariness of the lifestyle change is completely overshadowed by how much better everyone's quality of life is. My father was upset and hostile when I started my diet. He felt that this would somehow ruin my life...until he saw how much better I was feeling, and realized that my mother would probably feel a lot better on the diet, as well.

Celiacs live 7 years longer? Do you have a link to that information? I would love to read that!

[T.H.]

So happy to hear that you found such a wonderful doctor who paid attention to his patient first (seems like to the other one, ego came first, patient second. ) .

Just...enjoy having your wife back again. I hope you two have a grand time of things. :-)

[dkhb2000]

I'm in tears with you as I read this. I am the wife going through EXACTLY what you and your wife are going through right now, doctor, health etc. I can see the joy in my husband and kid's faces when I want to wrestle with my kids, play catch and actually SMILE and LAUGH now! Just 78 days ago I was someone I didn't even know anymore!

Thank you Skylark and Mushroom! We're both positively ecstatic at how she's progressing on the diet, it's almost miraculous. She's lost 4 lbs this week already, has had NO stomach distention at all, and hasn't had any stomach acid despite not taking her Aciphex for the last few days. Her energy levels continue to climb, our kids are amazed to have their mom back, and I have the pleasure of getting back the happy, outgoing, energetic woman I fell in love with so many years ago! Fighting back tears of joy as I type this....

I just called and told her to pick out one of those sexy outfits that she hasn't fit into in a while 'cause I'm taking her OUT on the town tonight to celebrate (gluten free of course, lol)!

Thank you all for creating and contributing to this wonderful resource, I'm sure it has saved people's lives both figuratively and physically!

[Robert16]

Was just wondering if your Doctor names is Dr.Deal from Macon georgia he did the same to me I didnt bother with any of test he wanted too do and won't go back to him

[Stephdso]

Can anyone recommend a really good Celiac Doctor in Houston? I already know I have Celiac and Food Allergies. I am looking for someone who will do follow up blood work on a regular basis to make sure I am not nutrient deficient. I have looked for a medical nutritionist but have found none. Regular nutritionist have been useless.

Thanks,

Steph

2008 Soy Free

2010 Gluten Free

2010 Dairy Free

2011 Corn & Rice Free

[Gemini]

You need a different doctor, or to get really tough with this one. Any doctor who is so closed minded that he can't LISTEN when a patient says they feel dramatically better after a lifestyle change does not deserve your time and money. He is recommending meds because the ex-beauty pageant winner who is now a pharmaceutical rep visited the office last week and his free pen and printed prescription pad remind him of her. (No, I'm not making this up.)

:lol: That last line got me! How true!

[ncallier]

Was just wondering if your Doctor names is Dr.Deal from Macon georgia he did the same to me I didnt bother with any of test he wanted too do and won't go back to him

I, too, am from middle Georgia. I haven't found a dr. who is capable of managing my celiac disease; I hope you have and can recommend one to me. Please let me know if you have found a good dr. I am newly diagnosed and desperately need help!!

Thanks!!