Help with ongoing issues and diagnosis

[Kwx525]

I was diagnosed with Celiac nearly 2 years ago. I had a confirmed blood test, which wasn't terrible high, I have the genetic predisposition, and had an endoscopy that showed duodenitis with mild villous flattening, lymphoid hyperplasia, features suggestive of celiac sprue. There was also an ulcer: 5 mm duodenal ulcer: bulb, nl 2nd portion of duodenum I went to get an updated blood work and the new test showed elevated liver enzymes and a few other issues that they were not terribly worried about. The doctor had noted that she wants to do another endoscopy to confirm celiac. I have been on a gluten free diet for over a year now and blood work has came back and confirmed that the diet is working. I do have occasional gluten attacks a few times a month that cause me issues or the standard symptoms that most have.  I think she is questioning the diagnosis due to the ulcer that was reported and the mild flattening. My question is: an endoscopy while on a gluten free diet will most likely show that I have healed somewhat and would probably show no issues. I know this is speculative, but I thought you had to be eating gluten consistently over a long period of time to show issues with the villa. So then I could eat gluten? This doesn't make any sense. I have had issues with stress/anxiety that may be have an additional impact on my stomach issues. If anyone has any insight or similar experiences let me know.

Thanks

[RMJ]

Some doctors are just very resistant to giving a diagnosis of celiac disease! Hopefully your villi will have healed after two years on a gluten free diet.  If this were my doctor I would want to know in advance how she would interpret the results, either with healthy or flattened villi.

[Kwx525]

I just spoke with the office. They want to do another endoscopy to confirm celiac and make sure there is nothing else wrong or more ulcers. I guess why this doctor is hesitant is because there was an ulcer with my first endoscopy. She said ulcers can cause inflammation and cause the blood markers for celiac to increase. I mentioned what would happen if everything was fine, and they said then we could reintroduce gluten to my diet to be sure it is gluten/celiac issue. I feel liking being gluten free and dealing with gluten attacks that I prolly have it. It’s just annoying to have to rule it in or out again. 
 

Thanks

[ravenwoodglass]

You had a positive diagnosis with blood, endo and genetic markers when you were diagnosed. Blood testing has shown your numbers have come down and you have had some relief although you admit to a few glutenings. Your doctor now wants to do another endo and if that comes back negative for celiac they will put you back on gluten to see if you get sick enough to again get positive celiac results.  I could see if they want to do another endo to make sure your ulcer is healed but their plan as far as celiac diagnosis goes isn't a good one. You are already diagnosed and recent testing has shown that was a good diagnosis. Maybe get a second opinion?

[Kwx525]

I made an appointment with another doctor or for the endoscopy so I can get this over quicker. I agree with what you said it seems weird to kind of work backwards. I guess they wanna be sure that this is the issue. Made the appointment for Friday, so I will know soon. So what, then I go and get a whopper from Burger King or something and see what the hell happens?… I’m sure I’ll get sick. I’ll update the with my results from the endoscopy. 

[ravenwoodglass]

1 minute ago, Kwx525 said:

I made an appointment with another doctor or for the endoscopy so I can get this over quicker. I agree with what you said it seems weird to kind of work backwards. I guess they wanna be sure that this is the issue. Made the appointment for Friday, so I will know soon. So what, then I go and get a whopper from Burger King or something and see what the hell happens?… I’m sure I’ll get sick. I’ll update the with my results from the endoscopy. 

Do make sure to take copies of all the tests that have been done so far. If you don't have an online portal you can get then from get them from the doctor. They should have no issue with letting you pick up copies. Please don't go for that Whopper.

[Scott Adams]

It seems strange for the doctor to put you through this, given the health issues that are associated with untreated celiac disease. Given that you've already discovered that your symptoms are associated with gluten, you may want to re-think going through all of this again and further delaying your recovery.

[Kwx525]

I have all the information. I will avoid the whopper. If it turns out that they do want me to introduce gluten, and I do react quickly, I’ll just make it a point to document all symptoms and report promptly. I’m not going on gluten food for weeks just to take another blood test to appease someone. 

[ravenwoodglass]

2 minutes ago, Kwx525 said:

I have all the information. I won’t. Seems weird to have to prove it again though. 

You don't have to. You do not need a doctors permission to be gluten free.

[Kwx525]

My job requires a physical and updates on symptoms. As I’ve learned recently, the mental side of dealing with this can be a bigger hurdle than dealing with the physical issues.

[ravenwoodglass]

17 minutes ago, Kwx525 said:

My job requires a physical and updates on symptoms. As I’ve learned recently, the mental side of dealing with this can be a bigger hurdle than dealing with the physical issues.

If you have one near you perhaps a Celiac Support group might help? It is a struggle and many folks don't understand how hard it can be first. Hang in there and I hope things get better for you soon.

Feel free to ask any question and or vent as much as you need here too.

Edited March 14, 2023 by ravenwoodglass

[SandyV]

5 hours ago, Kwx525 said:

I was diagnosed with Celiac nearly 2 years ago. I had a confirmed blood test, which wasn't terrible high, I have the genetic predisposition, and had an endoscopy that showed duodenitis with mild villous flattening, lymphoid hyperplasia, features suggestive of celiac sprue. There was also an ulcer: 5 mm duodenal ulcer: bulb, nl 2nd portion of duodenum I went to get an updated blood work and the new test showed elevated liver enzymes and a few other issues that they were not terribly worried about. The doctor had noted that she wants to do another endoscopy to confirm celiac. I have been on a gluten free diet for over a year now and blood work has came back and confirmed that the diet is working. I do have occasional gluten attacks a few times a month that cause me issues or the standard symptoms that most have.  I think she is questioning the diagnosis due to the ulcer that was reported and the mild flattening. My question is: an endoscopy while on a gluten free diet will most likely show that I have healed somewhat and would probably show no issues. I know this is speculative, but I thought you had to be eating gluten consistently over a long period of time to show issues with the villa. So then I could eat gluten? This doesn't make any sense. I have had issues with stress/anxiety that may be have an additional impact on my stomach issues. If anyone has any insight or similar experiences let me know.

Thanks

We must never acquiesce to this horrendous disease. I am hurt because cancer, high blood pressure, and diabetes are so well known. Spreading awareness of Celiac Disease is of upmost importance to me. 18 years ago, I had an intestinal biopsy... 18 years ago! Still many are not familiar with this disease. Why? 

[Jane smith]

9 hours ago, Kwx525 said:

I was diagnosed with Celiac nearly 2 years ago. I had a confirmed blood test, which wasn't terrible high, I have the genetic predisposition, and had an endoscopy that showed duodenitis with mild villous flattening, lymphoid hyperplasia, features suggestive of celiac sprue. There was also an ulcer: 5 mm duodenal ulcer: bulb, nl 2nd portion of duodenum I went to get an updated blood work and the new test showed elevated liver enzymes and a few other issues that they were not terribly worried about. The doctor had noted that she wants to do another endoscopy to confirm celiac. I have been on a gluten free diet for over a year now and blood work has came back and confirmed that the diet is working. I do have occasional gluten attacks a few times a month that cause me issues or the standard symptoms that most have.  I think she is questioning the diagnosis due to the ulcer that was reported and the mild flattening. My question is: an endoscopy while on a gluten free diet will most likely show that I have healed somewhat and would probably show no issues. I know this is speculative, but I thought you had to be eating gluten consistently over a long period of time to show issues with the villa. So then I could eat gluten? This doesn't make any sense. I have had issues with stress/anxiety that may be have an additional impact on my stomach issues. If anyone has any insight or similar experiences let me know.

Thanks

Personally I think if you’ve been on a gluten-free diet your blood work won’t show gluten bc you aren’t eating any. I was diagnosed 4/28/08 on a gluten-free diet & still have issues. I think it goes with the stubborn disease. And stress is absolutely almost just as bad as consuming wheat. It will really irritate your digestive track for sure. Cramps bloating all of it. Are you consuming dairy or soy there’s a lot of foods you shouldn’t be having. I hope I helped. Meditation breathing exercises do help

[Kwx525]

I stay away from everything dairy/cheese. Yeah. I believe they were concerned about the ulcer when the last Dr diagnosed celiac. 

[Kwx525]

On a side note, does anyone have issues with knee pain. Specifically joint pain, and stiffness. When I get up to walk, I look like a 90-year-old man, hobbling. It could be just getting older and lack of exercise. However, I figured there could be some kind of connection. My bloodwork hasn't shown any correlation to bone density issues or anything like that. 

Thanks

[Russ H]

There is an association between coeliac disease and inflammatory arthritis. It is also quite common to have insertional tendinopathy on diagnosis (even if asymptomatic). The patella and Achilles' tendons are commonly affected. I was plagued with insertional Achilles' tendonitis for 2 decades before diagnosis, and this gradually resolved on a strict gluten-free diet.

[Kwx525]

This is my original bloodwork with of course the hard to read note from the doctor. I just go this from my original Dr. Ill make sure I show this to my new Gastro Dr. 

[RMJ]

Your original post said your blood test wasn’t terribly high, but a 46.2 with a reference normal range of <20.0 is a definite positive!

[Kwx525]

Yeah, I get confused by the reference ranges and units sometimes. I would assume when they see that number, they probably won't question the diagnosis from the first Dr. 

Thanks

[Wheatwacked]

On 3/15/2023 at 9:44 AM, Kwx525 said:

When I get up to walk, I look like a 90-year-old man, hobbling.

I got that when they put me on the BP medication Hydrozoline. Started on Nov 9. On Nov 12 I noted "knee unstable" One hour after taking a dose I was wobbling like a bobblehead doll and bent over. It improved through the day until the next dose. I went from normal to walking bent over with each dose. Had I not stopped it I was destined for a walker at best.  Next they tried Chlorthalidone another first line diuretic for BP. In 1995 I got a small tear on my right knee medial meniscus. It healed and over the years become a non issue. The Chlorthalidone attacted control of my quadrecepts the muscles that support the knee and suddenly my knee won't support me, until the dose wore off. On my way to crutches.  I often wonder when I see old people hunched over, how many are that way because of the wrong BP meds? Now on Clonidine .2 mg three times a day and BP is consistantly between 140 and 115 mmHg. Plus the added benefit that clonidine was originally an ADHD med and it helps me focus. ADD like Celiac is a disease that is thought to be "all in your head" so no doctor would treat me without a psychiatrist. Took til 2022 at age 73 to get treated for something my pediatrician diagnosed when I was 10 in 1962, and even then it was a serendipitous path.

[Mathew]

9 hours ago, Wheatwacked said:

I got that when they put me on the BP medication Hydrozoline. Started on Nov 9. On Nov 12 I noted "knee unstable" One hour after taking a dose I was wobbling like a bobblehead doll and bent over. It improved through the day until the next dose. I went from normal to walking bent over with each dose. Had I not stopped it I was destined for a walker at best.  Next they tried Chlorthalidone another first line diuretic for BP. In 1995 I got a small tear on my right knee medial meniscus. It healed and over the years become a non issue. The Chlorthalidone attacted control of my quadrecepts the muscles that support the knee and suddenly my knee won't support me, until the dose wore off. On my way to crutches.  I often wonder when I see old people hunched over, how many are that way because of the wrong BP meds? Now on Clonidine .2 mg three times a day and BP is consistantly between 140 and 115 mmHg. Plus the added benefit that clonidine was originally an ADHD med and it helps me focus. ADD like Celiac is a disease that is thought to be "all in your head" so no doctor would treat me without a psychiatrist. Took til 2022 at age 73 to get treated for something my pediatrician diagnosed when I was 10 in 1962, and even then it was a serendipitous path.

Feel ya pain bro

[JD-New to Celiac]

On 3/15/2023 at 9:44 AM, Kwx525 said:

On a side note, does anyone have issues with knee pain. Specifically joint pain, and stiffness. When I get up to walk, I look like a 90-year-old man, hobbling. It could be just getting older and lack of exercise. However, I figured there could be some kind of connection. My bloodwork hasn't shown any correlation to bone density issues or anything like that. 

Thanks

I am not sure if my challenges were entirely due to deficiencies but as my celiac symptoms got worse I found that I had pain in my joints. It seemed to travel from one  joint to another. I had X-rays done of two of the more painful areas and I was told it was osteoarthrosis. They noted spurring in the knee and the plantar fascia. Bone density though is listed as normal. Also, someone on this site gave me advice when I was having severe leg cramping where I could not move. It was likely due to a deficiency in magnesium. I have since taken that supplement daily and the leg cramps are gone.

[Wheatwacked]

On a positive note it is good to know that your doctor did not just say you have celiac disease, go forth and be gluten free.

She cares enough to know the ulcer needs to watched.

Once clear of the gluten damage most deficiencies get better but taking extra vitamins and minerals to enhance your dietary intake will speed the process. Vitamin D will never unless you get sun or take pills or cod liver oil.