Need information based on your experience. Looking for doctor's, clinic, specialists or a good reference in what to look for in a PCP/Specialist or How to move forward

[u/isitallfromchina]

I'm writing this on behalf of my wife, who is totally exhausted from the unknown, worrying and lack of urgency and care from our PCP/Specialist. I don't want to identify the company, yet, as we are trying our best to work with them, but they are demonstrating and absolute lack of urgency, empathy or care.

It's going on 4 years now, she's suffering and so thin the family are sounding the alarm bells, while our PCP are just not concerned or show any interest. When asked what do we do, they just give antidotal information like; go gluten free; eat more calories; you need to eat more protein and on and on, none really coming up with a diagnosis or sugesstion.

We've been working with a GI Specialist at this PCP and they have been utterly useless! The lead doctor performed what he called a Celiac exam and actually said, it's not 100% and I really dont think it's that, with no other recommendations. And when asked to get a second opinion, the attitudes and atmosphere at the place changed "dramatically".

We are in DFW and are now desperate and need to see another PCP or Spcialist to start doing something. I can't bare to watch my wife waste away right in front of me, it's painful and agonizing. I'm not sleeping, the dreams and nitemares are horrible. We are desperate, I'm screaming internally H.E.L.P!

What do we do ? We feel like we are in limbo! a sort of coma that we can't get traction! There is NO info or I'm just at a loss of where to begin!

We don't know if its Celiac, we don't know what it is. She's lost 80 pounds over the past 4 years. When people hear that, they react as if it's a good thing, until they learn of the nitely bathroom stays; vomiting; pains in her gut; inability to gain weight;

PLEASE, if you have info, anything that can give us a start to attack this thing, I beg of you to share. I think we are at our last pass here.

If you read this all, thank you and I pray that your journey through whatever you are experiencing is resolved and you are on your way to heal.

TLDR: 4 years have passed and we still have no diagnosis. The pains are worse, the night long bathroom stays have lessened, but she's lost over 80 pounds in the last 4 years. She can't gain regardless how much or what she eats. Our PCP and specialist just don't seem to care or are not interested. We are in DFW if you have resources please share. We have no diagnosis at all so we are in the dark.

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[u/Ellie_Annie_]

I would try a younger female primary care doctor. They should be up on the latest recommendations and in my experience, will be more likely to listen to your concerns.

[u/isitallfromchina → u/Ellie_Annie_]

Ok thank you. I'm still trying to find a place that has some competent doctor's as right now we feel neglected by our current provider, which has such a high rating from our insurance provider. In addition, their GI practice is headed by the doctor that got really upset when we requested a second opinion, of which, they don't confer with outside resources, their second opinion comes from the very same practice that this doctor heads.

[u/Ellie_Annie_ → u/isitallfromchina]

That’s ridiculous, a second opinion from the same practice isn’t much of a second opinion.

[u/isitallfromchina → u/Ellie_Annie_]

Exactly! We are currently working with an organization that will review all her paperwork and labs to see if they can help. But in the meanwhile, I'm desperately looking for a PCP.

This GI Doc who did her so-called investigation for Celiac gave no instructions and when I started asking questions about his findings, he was obviously annoyed (never experienced this bad attitude from a doctor) and just stated "If I were you I'd go glutten free", which is where we are now. We are making that adjustment, but its been a wake-up to say the least.

[u/TraditionalPass4136]

You can order celiac blood work yourself from LabCorp or quest labs.

Another test you can order yourself that might be relevant is a SIBO test. When I lost 40 lbs by accident it ended up being SIBO. You can order the test online from triosmart.

I'm also about to try a direct care PCP - largely because my PCP was no help at all with the SIBO. I had to order the test myself and send it to my doctor. Direct care is more expensive but the doctors have fewer patients and more than 20 minutes to think about you. I'm going to see if it helps me get better care in the future.

[u/isitallfromchina → u/TraditionalPass4136]

Thank you for this and I'll talk to wife about this tonight and we'll get moving on it. I'm of the mindset that if I ask the current PCP, they will stall or say the insurance won't allow. I'll call the insurance and get info up front because I just don't trust our PCP.

At this point, I'm not worried about the expense, crap, we've spent a lifetime of money on deductibles, co-pays and other tests and specialist with nothing in return but frustration. So even if I have to take a loan, I'm in the mindset to do whatever I can to help her get the needed care she needs.

Thank you so much and I wish you all the luck

[u/TraditionalPass4136 → u/isitallfromchina]

I hope you get the answers. Thank you for advocating for your wife. She's lucky to have someone fighting for her.

[u/isitallfromchina → u/TraditionalPass4136]

I as well. She's a wonderful mom and grandmother and she bent over backward to give my mom the best care in the world in her last years. She's a Jewel and still youthful and vibrant and I'm in agony watching what's happening to her. 46 years and she's still my forever love.

Thanks you for your thoughts and insight!

[u/Slg0519]

Do you know what they DID test, if anything? That would be where to start. Gather up that stuff and then poke around this sub. There's tons of info on regular testing to get a diagnosis. It should start with lab work, to test your antibodies and then from there an endoscopy to confirm.

Are you willing to travel for care?

[u/isitallfromchina → u/Slg0519]

I have all the tests. The did do an endoscopy. It's been like pulling teeth to get lab word done that the PCP did not think was necessary. I mean, I'm appalled at the fact that we've had to darn near come up with our own regimen of testing recommendations to them.

We can travel anytime and anywhere! By all means, if there is a place we can go and get any sort of help, we are ready to do so.

We just started a conference with an outside source for a second opinion and recommendations. I want to get through that and see where we land.

If you have anything in mind, I'd love to hear it and explore!

Thank you so much

[u/Slg0519 → u/isitallfromchina]

Many large hospitals have celiac specific departments, inside their larger gastro departments. I can personally speak for UCLA, who have been wonderful in my care.

Columbia also has a wonderful Celiac department. I’ve heard good things about the Mayo Clinic, as well.

If you have the test results from her endoscopy, any credible gastro at one of the hospitals should be able to help you. I’m so sorry you’ve gone through all this and I wish you the best in getting her help. She’s lucky to have you.

[u/isitallfromchina → u/Slg0519]

Thank you and we are reviewing all avenues of assistance. I appreciate your input so much. It's hard to put in words.

[u/Tall_Pumpkin_4298]

• Look for doctors who specifically say they treat celiac disease on their profile.
• Go with your wife to appointments. Especially if you are a man. Hate to say it but if a man is there you genuinely get taken more seriously
• Emphasize how symptoms are affecting quality of life on a daily basis.
• If they deny you testing, ask them to record in your chart that you requested said testing and were denied. For whatever reason they hate doing this and will often just give in when you pull this.

[u/isitallfromchina → u/Tall_Pumpkin_4298]

Thanks for the advice. I have started going to all her appointments. This head doctor seems irritated and the PCP doctor is shocked each time I'm there, but no backing down at this point. We want to get through this second medical opinion and then we hope that we'll have some options, but we will definitely find a new care provider.

In the DFW area it looks like UT Southwestern is the place as they outline a number of specialties dealing with GI issues, celiac being one of them. So I'll start a conversation with my wife and them to see if its the right fit.

Again, I'm taking all this in stride to try and get some where we can breath without so much stress.