DH is finally going to the doctor!

[Kanin]

Well guys, my DH is finally going to the doctor as soon as we can get an appointment. He is VERY opposed to doctors (I think he's mostly just nervous), and he hasn't been to a regular doctor's appointment since college. He has gone to urgent care a number of times over the years, but no run of the mill appointments.

We think it's a possibility that he has Lyme. His knees and hips started hurting (mildly) a couple weeks ago, waxing and waning. No rash, no tick bite that we can see, but those suckers can be tiny. He is going to be tested for Lyme, hopefully.

I'm so glad he's finally going in, though, because he's been having stomach issues for YEARS, like at least 5 years. It started after a period of intense stress (finishing PhD and job hunting, ugh), combined with a few round of pretty serious antibiotics. If my googling is correct, I'd guess he has SIBO, the methane kind. Constipation and bloating have been around ever since, sometimes better and sometimes not. If he eats lower FODMAP and lower histamine foods, he feels better, so I think there's an imbalance of gut bacteria in there, and has been for a long time.

BUT! He's also had a weird skin thing. A patch of raised, thick, red and itchy skin on his elbow, about the size of a quarter. This has popped up and gone away three times now. It looks like psoriasis without the scaling, if that's possible. He said it's terribly itchy. Now with the joint pain, I'm concerned about psoriatic arthritis. That would really, really be a bummer.

Anyway. I'm hoping he really likes the doc at this practice (she looks smart and adorable!). It's not a hospital, so hopefully it'll be less scary for him. I've been stressed about his health for a long time now, especially since everything is such a guessing game without *actual* information! For a smart guy, he sure doesn't apply his brain to his own health situation! I hesitate to start the AIP diet if it's not going to help. That's a serious commitment, and I worry about making his food intolerances even worse. Maybe he will listen to the doc's advice once he's actually in the office, and we can finally get some things figured out!

[kbutton]

2 hours ago, Mainer said:

I hesitate to start the AIP diet if it's not going to help. That's a serious commitment, and I worry about making his food intolerances even worse. Maybe he will listen to the doc's advice once he's actually in the office, and we can finally get some things figured out!

Speaking as someone who developed food issues (probably due to strong antibiotics), don't change more than one thing at a time or be too drastic on your own. Even with doctor's advice, just be careful to watch how his body responds to things before going too crazy. Obviously, if the doctor is amazing, has a diagnosis, and has a clear treatment plan, that's different.

I have to figure it out myself, and my body keeps changing on me--I did one elimination diet and found a problem with gluten. That stabilized me for years, and then the rest of the food issues ramped up--at this point, an elimination diet would be exceedingly hard to do.

Don't be surprised if they do a ton of workups for cholesterol, blood sugar, etc. and kind of go wild since he's not had a primary doctor before.

I hope it goes well and that you get answers! 

[ktgrok]

He NEEDS to be tested for celiac. Constipation, gas, joint pain, and an itchy rash - especially on the elbows - is all classic, textbook Celiac. https://www.beyondceliac.org/celiac-disease/related-conditions/dermatitis-herpetiformis/

[ktgrok]

https://celiac.org/about-celiac-disease/symptoms-of-celiac-disease/

[ktgrok]

Oh, and he has to be eating gluten for about 2 months, on a daily basis, ideally multiple times a day, for testing to be accurate. 

[Bambam]

I think that is great he is going. Are you going with him? My experience with doctors is they usually go for the quick solution (treat the symptoms) vs. spending a lot of time trying to figure out the real problem. So, I'd warn him that this probably isn't a one-and-done type deal - he may have to go back for tests, more appointments, etc. 

[Kanin]

59 minutes ago, Ktgrok said:

He NEEDS to be tested for celiac. Constipation, gas, joint pain, and an itchy rash - especially on the elbows - is all classic, textbook Celiac. https://www.beyondceliac.org/celiac-disease/related-conditions/dermatitis-herpetiformis/

That's interesting - we WERE gluten-free for about 6 years, strictly, but it was for me. I've had my own joint paints for about 8 years now (wrists, fingers, feet), but after seeing doctors and spending a ton of $$, I gave up. Decided to be gluten free to see if it would help. DH just went along for the ride with gluten free. 

When we moved about a year ago, we started eating gluten again (ack!). I stopped recently, because every time I eat it, I feel exhausted. DH has occasionally had gluten every couple weeks or so for about a year.

The rash is only on one elbow, and it's more of a solid mass rather than blisters. I thought the dermatitis herpetiformis rash was more blistery?

[Kanin]

46 minutes ago, Bambam said:

I think that is great he is going. Are you going with him? My experience with doctors is they usually go for the quick solution (treat the symptoms) vs. spending a lot of time trying to figure out the real problem. So, I'd warn him that this probably isn't a one-and-done type deal - he may have to go back for tests, more appointments, etc. 

I think it's great too 🙂 I could go, but I wonder if he would feel more awkward, or if the doc would feel more awkward? 

If I go, I'll have a long list of topics to address and won't leave till we get to them all 😄

 

[Kanin]

5 hours ago, kbutton said:

Speaking as someone who developed food issues (probably due to strong antibiotics), don't change more than one thing at a time or be too drastic on your own. Even with doctor's advice, just be careful to watch how his body responds to things before going too crazy. Obviously, if the doctor is amazing, has a diagnosis, and has a clear treatment plan, that's different.

I have to figure it out myself, and my body keeps changing on me--I did one elimination diet and found a problem with gluten. That stabilized me for years, and then the rest of the food issues ramped up--at this point, an elimination diet would be exceedingly hard to do.

Don't be surprised if they do a ton of workups for cholesterol, blood sugar, etc. and kind of go wild since he's not had a primary doctor before.

I hope it goes well and that you get answers! 

Oh gosh, sorry you're dealing with so many food intolerances. Have you managed to figure anything out? And were doctors helpful?

Antibiotics are so tough. We didn't know back then that we should have been building up his gut post-antibiotics. I'm not sure it would even really work, considering how diverse gut bacteria are, and how limited probiotics are.

I do hope they do as many workups as possible! Since he never goes, this might be it for a while... particularly if he has a negative experience. I found out about this practice through my mother's doctor, whom we adore. So hopefully it's at least neutral, trending toward positive!

 

[Kanin]

This is what the rash looks like. I never could get a good picture, but it looks exactly like this other person from the internet. It's only on one elbow.

[Kanin]

Can a person develop Celiac as an adult?

[kbutton]

5 minutes ago, Mainer said:

Oh gosh, sorry you're dealing with so many food intolerances. Have you managed to figure anything out? And were doctors helpful?

Antibiotics are so tough. We didn't know back then that we should have been building up his gut post-antibiotics. I'm not sure it would even really work, considering how diverse gut bacteria are, and how limited probiotics are.

I have some help from an allergist, but not quite what I want. He tends to say things that contradictory in the same visit. In fact, my DH and I aren't even sure what his overall plan for my care is. He seems to want to reveal things one step at a time each appointment vs. giving us an overview, but he simultaneously criticizes everything I ask or share with him when I come in. So, he's also rude. I am trying to find a new one. 

I am not sure you can fix it all with probiotics either. I think it was fluoroquinolones that did me in. Lots of people are never the same afterwards, and they are now known to put people at risk for aortic aneurysms on top of their other nastiness. https://www.fda.gov/drugs/drug-safety-and-availability/fda-warns-about-increased-risk-ruptures-or-tears-aorta-blood-vessel-fluoroquinolone-antibiotics 

[Kanin]

31 minutes ago, kbutton said:

I have some help from an allergist, but not quite what I want. He tends to say things that contradictory in the same visit. In fact, my DH and I aren't even sure what his overall plan for my care is. He seems to want to reveal things one step at a time each appointment vs. giving us an overview, but he simultaneously criticizes everything I ask or share with him when I come in. So, he's also rude. I am trying to find a new one. 

I am not sure you can fix it all with probiotics either. I think it was fluoroquinolones that did me in. Lots of people are never the same afterwards, and they are now known to put people at risk for aortic aneurysms on top of their other nastiness. https://www.fda.gov/drugs/drug-safety-and-availability/fda-warns-about-increased-risk-ruptures-or-tears-aorta-blood-vessel-fluoroquinolone-antibiotics 

Geez, your allergist sounds like quite the charmer. I hope you can find a better one soon. Have you considered other kinds of doctors?

I think DH has had an antibiotic from that list. There was another super strong one in a different class, too, Clindamycin. Way too strong for what he had, but we didn't know that back then. Ugh. 

[kbutton]

3 minutes ago, Mainer said:

Geez, your allergist sounds like quite the charmer. I hope you can find a better one soon. Have you considered other kinds of doctors?

I think DH has had an antibiotic from that list. There was another super strong one in a different class, too, Clindamycin. Way too strong for what he had, but we didn't know that back then. Ugh. 

I live in a MRSA hotspot and have had it, so...it just stinks.

My family doctor is worse than my allergist, so I haven't tried another. I have horrid luck choosing doctors. My old allergist was wonderful, but she retired. I don't know if she would've done this intolerance stuff at all though. My OB/GYN is great, but this is not his thing either. I have a women's health NP that seems to be good so far. 

I am looking for a new GP but terrified to try one. The one I have that is awful is my THIRD. 

[ktgrok]

2 hours ago, Mainer said:

Can a person develop Celiac as an adult?

Yes, absolutely. It is autoimmune but "triggered" by something, no one knows for sure what. Virus is one possibility, but not the only one or a sure thing. 

And that rash looks like the celiac rash to me - a friend had it. They can biopsy it to be sure. I'd actually insist on one, because if it IS that, it's an easier way to diagnose it and you can skip the endoscopy that most people have to do for a definitive diagnosis. 

[MaBelle]

Dh has lyme and I have psoriatic arthritis.  I don't know which is worse.

[MEmama]

15 hours ago, Mainer said:

I think it's great too 🙂 I could go, but I wonder if he would feel more awkward, or if the doc would feel more awkward? 

If I go, I'll have a long list of topics to address and won't leave till we get to them all 😄

 

For this reason alone, you should go.

Plus, hearing all the information can be tough for just one person. Backup ears can catch a lot of ideas that might get missed by the patient, especially if he’s already likely to be overwhelmed.

[Kanin]

30 minutes ago, MEmama said:

For this reason alone, you should go.

Plus, hearing all the information can be tough for just one person. Backup ears can catch a lot of ideas that might get missed by the patient, especially if he’s already likely to be overwhelmed.

I agree with you. I'll give him the choice, but I hope he feels comfortable with me there.

[Kanin]

1 hour ago, MaBelle said:

Dh has lyme and I have psoriatic arthritis.  I don't know which is worse.

Oh no. I'm sorry!! They sound equally miserable to me.

Edited September 29, 2019 by Mainer

[Kanin]

13 hours ago, Ktgrok said:

Yes, absolutely. It is autoimmune but "triggered" by something, no one knows for sure what. Virus is one possibility, but not the only one or a sure thing. 

And that rash looks like the celiac rash to me - a friend had it. They can biopsy it to be sure. I'd actually insist on one, because if it IS that, it's an easier way to diagnose it and you can skip the endoscopy that most people have to do for a definitive diagnosis. 

Yikes! If that's so, it's my fault because I convinced him to try gluten again 😥 I should have realized his gut was a mess and it was a horrible idea! He would rather be undiagnosed and gluten free forever rather than do a scope.

The rash is weird. It looks similar to a number of things. UGH! It's only ever been on one elbow, not symmetrical...?

[ktgrok]

51 minutes ago, Mainer said:

Yikes! If that's so, it's my fault because I convinced him to try gluten again 😥 I should have realized his gut was a mess and it was a horrible idea! He would rather be undiagnosed and gluten free forever rather than do a scope.

The rash is weird. It looks similar to a number of things. UGH! It's only ever been on one elbow, not symmetrical...?

My 6 yr old managed the scope just fine, so I'm sure your DH can. But if that elbow is DH rash that's an easy biopsy and diagnosis. 

[kbutton]

Be aware that you might not be able to discuss all of this in one visit with the doctor. You might find out what the office policy is on longer visits--some docs do longer initial visits to get to know a patient, but might still stick to "well visit" topics and expect an additional visit another time. You might ask if you can book more than one visit at a time so that you have that longer timeframe for both the well visit and the concerns about gut issues and celiac. (And good luck getting the front desk people to understand that.) Some offices get REALLY frustrated and annoyed when you come it with more than one complaint, which to me, makes the idea of seeing a GP a joke. If they need to know your overall health picture, putting complaints into well-defined visits and mental silos is not going to result in a big picture idea of what's happening with the patient!!! Your insurance might also get micromanaging on this as well.

Also, anytime you go to the doctor, it's a good idea to ask the doctor what he/she was told is the reason you're there. At my family doc's, the people who do intake both by phone and in person at the office (the ones that do BP, etc.) NEVER get it right. Sometimes we can see what they write, correct them, and they write it down wrong again in a different way. 

Can you tell I hate going to the doctor? Sigh. Anyway, those are a couple of things I wish someone had told me long ago. I know them, and they don't seem to help me get better care, but they do help me understand why the office people are always mad and the doctor always seems surprised and annoyed at my questions. (Sorry for the cynicism.)

[cintinative]

21 hours ago, Ktgrok said:

He NEEDS to be tested for celiac. Constipation, gas, joint pain, and an itchy rash - especially on the elbows - is all classic, textbook Celiac. https://www.beyondceliac.org/celiac-disease/related-conditions/dermatitis-herpetiformis/

^^^ this. All of the symptoms fit.  PLEASE have him tested. 

[Kanin]

4 hours ago, cintinative said:

^^^ this. All of the symptoms fit.  PLEASE have him tested. 

Oh dear. I feel so guilty right now! 🙁

[cintinative]

22 minutes ago, Mainer said:

Oh dear. I feel so guilty right now! 🙁

 

Please don't. I had concerns about my son's growth for years before he was diagnosed but the doctor said he was just small. Then when he started having traditional symptoms (stomach pain, etc.) we thought it was because he was on so many antibiotics, or maybe because he was constipated, etc., etc.  His stomach would hurt at night and I would give him crackers. Crackers!  Trust me, most Celiac moms have stories like this. And the average time for diagnosis for Celiac is (was??) seven years the last I heard.  There is greater awareness now but there are still a lot of docs who don't think to check for it until a lot of other diagnoses have been pursued.  A friend did not get diagnosed until she was an adult and very sick and that was after years and years of not being well.  

The reason we push for the diagnosis is that the first step is only a blood test, which is truly so simple.  That blood test identified that my son's TTG-IgA was off the charts and then his endoscopy confirmed he had completely blunted villi.  A gluten-free diet keeps my son's symptoms under control. While I would not say it is easy, in the general scheme of things, I am so grateful that this is something we can address with diet.  

It is totally worth pursuing. It might not be *the* answer for your husband, but it is worth asking about and checking.  Hugs.  My husband descended what I call the health care rabbit hole a few years ago and it was very stressful.

Edited September 29, 2019 by cintinative

[cintinative]

Regarding Celiac diagnosis: 

The Canadian Celiac Health Survey¹ revealed that 37% of respondents had consulted two or more family physicians, 27% saw three or more physicians and 14% consulted two or more gastroenterologists before reaching a diagnosis of celiac disease. The mean delay in diagnosis was 11.7 years after onset of the symptoms.

The University of Chicago Celiac Disease Center reports: "The average length of time it takes for a symptomatic person to be diagnosed with celiac disease in the US is four years; this type of delay dramatically increases an individual’s risk of developing autoimmune disorders, neurological problems, osteoporosis and even cancer." (2003)

 

Edited September 29, 2019 by cintinative

[Kanin]

17 hours ago, cintinative said:

Please don't. I had concerns about my son's growth for years before he was diagnosed but the doctor said he was just small. Then when he started having traditional symptoms (stomach pain, etc.) we thought it was because he was on so many antibiotics, or maybe because he was constipated, etc., etc.  His stomach would hurt at night and I would give him crackers. Crackers! 

Well... crackers ARE good for many people, so you were just doing what you thought was best. I'm bummed because I KNEW DH's gut was pretty damaged, just not sure why.... but I also knew full well that gluten is not great for people with damaged guts. I guess I just really wanted the bread! And had no idea he actually had a problem with gluten, since he only went GF to humor me. 

My theory is that his gut was damaged from antibiotics, while we were gluten free. It was probably really good that we were gluten free for him, although we didn't have a reason for it back then. Then, when we started eating gluten again, his immune system rebelled.

People say you can develop sensitivities to foods if you haven't eaten them in a while. I wonder if that also contributed.

[Kanin]

23 hours ago, kbutton said:

Be aware that you might not be able to discuss all of this in one visit with the doctor. You might find out what the office policy is on longer visits--some docs do longer initial visits to get to know a patient, but might still stick to "well visit" topics and expect an additional visit another time. You might ask if you can book more than one visit at a time so that you have that longer timeframe for both the well visit and the concerns about gut issues and celiac. (And good luck getting the front desk people to understand that.) Some offices get REALLY frustrated and annoyed when you come it with more than one complaint, which to me, makes the idea of seeing a GP a joke. If they need to know your overall health picture, putting complaints into well-defined visits and mental silos is not going to result in a big picture idea of what's happening with the patient!!! Your insurance might also get micromanaging on this as well.

Sadly, this doesn't surprise me. What's the point of going to a GP if you can't discuss everything, though? Most adults have more than one thing going on, unless it's something urgent like strep throat. I once had a doctor ask if I had a degree in science. Nope... just did the most basic Google search ever. Us regular people can find out a lot from Google (or the Hive!).

I didn't think about insurance not liking the multiple topics. They can really dictate the variety of topics covered in a visit?!

[kbutton]

2 hours ago, Mainer said:

Sadly, this doesn't surprise me. What's the point of going to a GP if you can't discuss everything, though? Most adults have more than one thing going on, unless it's something urgent like strep throat. I once had a doctor ask if I had a degree in science. Nope... just did the most basic Google search ever. Us regular people can find out a lot from Google (or the Hive!).

I didn't think about insurance not liking the multiple topics. They can really dictate the variety of topics covered in a visit?!

I am not sure about insurance, but I think that they office has to code things in a way that insurance will accept, and if they code a bunch at once, insurance can breathe down their necks. It's more something I'd be keeping in the back of my mind.

It's not just GPs. I have found out more in half an hour with Dr. Google sometimes than in multiple specialist visits. I have also found out that I was right about MULTIPLE rare to semi-rare things in my family that I researched on my own--in some cases, they were diagnosed but not treated correctly; in one case, it was under the radar and then diagnosed because of my concern. But the doctors who see me being correct are seeing me be correct on someone else's behalf, so it doesn't help me with my own doctors. Don't get me started on specialists who aren't up-to-date and/or curious. Grr. Rare and lethal gets research, and there is zero excuse for a specialist not to be either hearing about that research or referring patients to a clinic within that specialty that does those things routinely. 

[Kassia]

14 minutes ago, kbutton said:

 

It's not just GPs. I have found out more in half an hour with Dr. Google sometimes than in multiple specialist visits.

 

Yes, Dr. Google has saved my life and saved my family from unnecessary medical treatments after being misdiagnosed.  I'm so tired of wasting time and money on terrible medical care.