Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Question About Doctor's Recommendations
0

16 posts in this topic

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! :)

0

Share this post


Link to post
Share on other sites


Ads by Google:

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. B)

4

Share this post


Link to post
Share on other sites

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. :(

0

Share this post


Link to post
Share on other sites

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! :angry: 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. :rolleyes:

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! :D

0

Share this post


Link to post
Share on other sites

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. :)

1

Share this post


Link to post
Share on other sites




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 :o You are so right about that other genius - he would never have found celiac if he wasn't looking for it :blink: Even if her endoscopy turns out negative, you know what you need to do now - you must feel so much better about everything :)

1

Share this post


Link to post
Share on other sites

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! :wub: 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)! :D

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

1

Share this post


Link to post
Share on other sites

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.

1

Share this post


Link to post
Share on other sites

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 :)

0

Share this post


Link to post
Share on other sites

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!

0

Share this post


Link to post
Share on other sites

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. :-)

0

Share this post


Link to post
Share on other sites

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! :wub: 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)! :D

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

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites
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: :lol: :lol: That last line got me! How true!

0

Share this post


Link to post
Share on other sites

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!!

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
      104,145
    • Total Posts
      919,571
  • Topics

  • Posts

    • I found when I went gluten free I started eating more dairy and that gave me worse stomach aches and bloating than the gluten did. So now I have to avoid gluten and dairy.  Maybe you have a similar problem with something you are eating.  I hope you feel better soon.  
    • Hi! I received my "official" celiac diagnosis last week. I had an endoscopy last month that was originally looking for ulcers and h. pylori, but they did some biopsies of my duodenum since they were in the neighborhood and the biopsy came back "consistent with Celiac's disease" and later. They urged me to get my blood checked and follow up with my primary doctor. My blood work came back negative, but my doctor was confident it's Celiac so told me to stay away from gluten. I've been completely gluten free (or to the best of my knowledge) for 2 weeks now, and my results are mixed. At first, I felt great! My stomach was no longer CRAZY bloated once I stopped eating pasta and bread, my acne started healing, and the red rash on the back of my arms started to fade. That was the first few days. Lately, though, my acne is once again flaring up and I've been SO EXHAUSTED. I feel so tired all the time. Even now I have fatigue in my head, limbs, and I could hardly walk or move my body earlier today. I'm overweight and I like to go to the gym, but what used to be an easy workout for me is kicking my ass! I used to go to the gym and tear it up: HIIT on the treadmill followed by 40 minutes of heavy weight lifting. Now I can hardly finish 3 reps in my first set without feeling like a nap. I can't run anymore because my body feels clumsy and heavy. Also, I'm still bloated. I don't suffer from painful, acute bloating, but I struggle to pass gas and I look like I have pregnant belly. I think I'm also retaining water all over my body, and I'm not sure if that's normal? For whatever reason, I have this belief that water is mainly retained in the core and not arms, legs, and face. Anyway, I'd love to hear what you have to say/what you've experienced. Is this typical to first going gluten free?
    • Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now. 
    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
    • This 4 out of 5 criteria does not apply to children. I was never given a reason why, but it isn't.     That said, you may try to get a second opinion from another GI who may be willing to give her a firm dx.  We were in your boat 6 years ago and while I'm sure I'll get slammed for it, I wish we had kept gluten in our kiddos diet till he scoped positive for a variety of reasons.  Again, even family is different and you have to find what is best for you!
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

    There are no registered users currently online

  • Member Statistics

    • Total Members
      61,177
    • Most Online
      1,763

    Newest Member
    lolobaggins
    Joined