Do I Have Celiac And Best Test

[WhatsTheDealiac]

Here are two pictures of the rashes on the underside of my arms. They both occurred at the same time, along with rashes on both knees. All of it occurred over 2 months ago.

https://ibb.co/7rCMWQK
https://ibb.co/PMcDLkz

As of now, I only have the rash remaining on the right knee, which is in the picture, in the post above.

[miguel54b]

To me, the best test and cheapest test a person could do for Celiac and Gluten sensitivity is to go 100% gluten-free for 3 months, if your medical problems start going away it is an indication that you have a gluten problem. Once I started my gluten-free diet I could tell the improvement after 3 days (better bower movement, no brain fog, less anxiety, less irritable, rash in arm less prominent) some other problems took longer to heal (tooth enamel defect, no light sensitivity, vision improvement, no inflammation, no joint pain, etc.). I suspected that oat was giving me canker sores, cuts under my toes, and pimples in my butt because after I went gluten-free I experienced those problems after eating oat, after I stopped eating it those problems went away. To make sure that that was the problem I ate it on purpose on two separate time and I experienced the problems each time. I am my own tester and I don't charge myself for it. 

[trents]

24 minutes ago, miguel54b said:

To me, the best test and cheapest test a person could do for Celiac and Gluten sensitivity is to go 100% gluten-free for 3 months, if your medical problems start going away it is an indication that you have a gluten problem. Once I started my gluten-free diet I could tell the improvement after 3 days (better bower movement, no brain fog, less anxiety, less irritable, rash in arm less prominent) some other problems took longer to heal (tooth enamel defect, no light sensitivity, vision improvement, no inflammation, no joint pain, etc.). I suspected that oat was giving me canker sores, cuts under my toes, and pimples in my butt because after I went gluten-free I experienced those problems after eating oat, after I stopped eating it those problems went away. To make sure that that was the problem I ate it on purpose on two separate time and I experienced the problems each time. I am my own tester and I don't charge myself for it. 

A reasonable approach that works for many but it would not work for "silent" celiacs who do not (yet) experience significant symptoms. By the time the damage to their small bowel villi becomes sever enough to produce significant symptoms, irreversible damage may have been done to body systems. People with first degree relatives having celiac disease should themselves seek testing, even in the absence of symptoms.

[knitty kitty]

@miguel54b,

I've often had to be my own guinea pig or lab rat.  

@trents,  

"Silent" Celiacs have posted on the forum that some of the things they took as "normal" improved or disappeared after going gluten free.  Some doctors and patients don't connect certain symptoms with Celiac Disease.  

[trents]

5 hours ago, knitty kitty said:

@miguel54b 

@trents,  

"Silent" Celiacs have posted on the forum that some of the things they took as "normal" improved or disappeared after going gluten free.  Some doctors and patients don't connect certain symptoms with Celiac Disease.  

Yes kk, but at some point testing would need to have been done for that connection made if they are truly silent. Otherwise, there would have been no motivation. The testing may have not be specifically for celiac disease but perhaps anemia showing up in a CBS or elevated liver enzymes in a CMP, as was the case personally.

[knitty kitty]

Yes, @trents, we need to make people aware that things like anemia and elevated liver enzymes and swollen achy joints and diabetes and hashimoto's thyroiditis and infertility and any of three hundred other symptoms can be indicative of Celiac.  

Celiac is not always a straight forward disease.  Some people suffer for years from various health problems.  Doctors put bandaids on symptoms by prescribing pharmaceuticals and not finding the cause of why the symptoms are occurring in the first place.  

And when our doctors brush us aside because they are at a loss as to the connectivity of the symptoms, we have to continue our journey the best we can despite their lack of knowledge.  

 

[WhatsTheDealiac]

A lot of great info from your replies here.

It has been awhile since we last talked. I am still experiencing symptoms.

I have decided to get a colonoscopy and endoscopy, as the timing for it has worked out very well.

I am getting those in about two weeks, and will report the results. If I am negative for Celiac, I will still go gluten free, and let you know how I feel, so people can learn from it, as well.

[trents]

5 minutes ago, WhatsTheDealiac said:

A lot of great info from your replies here.

It has been awhile since we last talked. I am still experiencing symptoms.

I have decided to get a colonoscopy and endoscopy, as the timing for it has worked out very well.

I am getting those in about two weeks, and will report the results. If I am negative for Celiac, I will still go gluten free, and let you know how I feel, so people can learn from it, as well.

Be aware that you will have needed to be eating regular amounts of gluten for at least two weeks leading up to the endoscopy/biopsy for it to be a valid test for celiac disease. Do you know that specifically they will be taking a biopsy of the small bowel lining when they do the endoscopy? You should not take it for granted that this will be done in conjunction with the endoscopy as they do endoscopies for other things besides celiac disease.

[WhatsTheDealiac]

On 3/4/2023 at 9:47 AM, trents said:

Be aware that you will have needed to be eating regular amounts of gluten for at least two weeks leading up to the endoscopy/biopsy for it to be a valid test for celiac disease. Do you know that specifically they will be taking a biopsy of the small bowel lining when they do the endoscopy? You should not take it for granted that this will be done in conjunction with the endoscopy as they do endoscopies for other things besides celiac disease.

I am not sure. When I explained all my symptoms last year, he said he wanted to do an endoscopy and colonoscopy. I asked him if he thought I had celiac at the time, too. He said we should get the tests done, and go from there. I will specifically ask him about this before the procedure. Thanks for pointing that out. 

[WhatsTheDealiac]

The procedure is getting pushed out one week, due to sickness.

Does anyone want to guess for fun, if it’s Celiac, NCGS, or something unrelated, based on the information I have provided?

[WhatsTheDealiac]

Had some blood tests done. If my albumin levels are slightly elevated, what are my chances of having Celiac? I have read that Celiac typically causes low albumin…

Potassium was in range. 

[plumbago]

Sometimes we try to tease out associations or causes where there are none. Add in the fact that lab results can change a lot from one draw to the other. Were you perhaps a bit dehydrated before the blood draw?

Did you have your 'scopes done yet?

[WhatsTheDealiac]

2 hours ago, plumbago said:

Sometimes we try to tease out associations or causes where there are none. Add in the fact that lab results can change a lot from one draw to the other. Were you perhaps a bit dehydrated before the blood draw?

Did you have your 'scopes done yet?

Nope. The big day is tomorrow. Is the prep really worse than the procedure?

[RMJ]

1 hour ago, WhatsTheDealiac said:

 Is the prep really worse than the procedure?

Yes!

[trents]

There is no prep needed for the endoscopy/biopsy but if you are having a colonoscopy done as well you will have to do a clean out. That's the only part you will remember.

[WhatsTheDealiac]

18 minutes ago, trents said:

There is no prep needed for the endoscopy/biopsy but if you are having a colonoscopy done as well you will have to do a clean out. That's the only part you will remember.

I’m glad to hear it.

I’m putting my guess in as no celiac, but we will see…

[trents]

Keep us posted.

[Jane07]

On 8/21/2022 at 11:01 PM, WhatsTheDealiac said:

hi I’m sorry about  what you’re going though where you from. Some test could be covered depending where you live. I’m getting a endoscopy next week in very scared to do that . Inhale the blood test the ttg test .

it’s very scary this situation have you lost weight 

i

On 8/21/2022 at 11:01 PM, WhatsTheDealiac said:

 

Hello.

I am a male, 36 years of age, and believe I have had celiac disease for 15 to 20 years. It started with brain fog, as far as I can remember, then came stomach problems, and loose stools about 99 percent of the time. Also, around the time I remember having stomach problems, i started having crazy sensitivity to sunlight, and I keep developing more and more floaters. The sensitivity is bad enough that, if I look out into the distance, I will start to cry from how unbearable it is.

 

For my stomach problems, I typically go to the bathroom the morning, and it is quite loose. It is typically once a day, but happens 2 or 3 times a day, on occasion.

 

Last month, I started getting a horrible itch on my anus, with bad itching on my scrotum and inner thighs. Around this same time, I got what I believe to be dermatitis herpetiformus under both my knees caps, on the front of both legs, as well as a bumpy rash near my armpits, on the underside of both arms. It hasn’t gone away  

I went gluten free 3 days ago. Since then, the only stabbing pain I got was when I exercised one day, which was accompanied by some serious gurgling. I have not gone to the bathroom yesterday and today, but I went 3 times on day 1 of gluten free. The day I went to the bathroom 3 times, I think I had anal fissures. I had a horrible pain when trying to wipe. The pain is not there, now, since I have not gone to the bathroom yesterday and today.
 

My questions are…

Do my symptoms sound like celiac disease to you? If so, what is my best approach for diagnosis. I don’t have health insurance right now, but would pay out of pocket for a colonoscopy and endoscopy, if need be.

My father mentioned getting an at home test to start. He also thought it would be a good idea to test for other food allergies. Do you think it is good to start with an at home test? If so, which test is a good choice?
 

I am looking forward to learning on this forum. Thanks, everyone. 

 

[WhatsTheDealiac]

Hello, everyone. Thanks for sticking through this with me, and all the great info and replies.

It’s not looking like celiac. The doctor said it is most likely IBS.

2 small polyps we’re discovered. No villi damage or any signs of inflammation. They did take biopsies of polyps and something during the endoscopy to rule our celiac.

I was informed to try a dairy free diet for 2 weeks. If that doesn’t help, he wanted me to try a diet where I avoid FODMAPs.

The procedure was easy. The prep isn’t much fun, but I did the second half of the prep without adding any flavors, of any kind. 

[trents]

Thanks for the update. So, have you considered NCGS (Non Celiac Gluten Sensitivity)?

[WhatsTheDealiac]

1 hour ago, trents said:

Thanks for the update. So, have you considered NCGS (Non Celiac Gluten Sensitivity)?

Yes. I was going to ask the people on here about it.

I know Celiac and NCGS have similar symptoms, but what are the things that set them apart, or are mutually exclusive of the other?

If I have NCGS, would the doctor have seen signs of inflammation?

I had the knee rash in the same spot that is in the top picture, when you Google dermatitis herpetiformus. If I don’t have a gluten sensitivity, it seems odd I had a blistery rash in the same spot…

 

[trents]

NCGS does not produce inflammation in the small bowel and so there are no antibodies produced and so there is no test available for it yet and since there is no inflammation a biopsy could not be used to detect it. Actually, NCGS is kind of an immune system mystery. We don't exactly know yet how it engages the immune system. Apart from GI distress it also shares with celiac disease the potential for ataxia and other neurological damage. Many people will embark on the gluten-free diet because they know gluten makes them ill but without ever being able to distinguish which one they have. And at the end of the day it may not make any difference to know which you have since both demand total gluten abstinence. I'm afraid a lot of people are under the impression that if the have NCGS instead of celiac disease they can be more relaxed about gluten exposure. Sorry, I wish I could answer your question more completely.

[WhatsTheDealiac]

Good answer. Next week, I will have a reply from my doctor on the rashes. I will update at that point. 

I will then try gluten free or dairy free, one at a time.

3 minutes ago, trents said:

NCGS does not produce inflammation in the small bowel and so there are no antibodies produced and so there is no test available for it yet and since there is no inflammation a biopsy could not be used to detect it. Actually, NCGS is kind of an immune system mystery. We don't exactly know yet how it engages the immune system. Apart from GI distress it also shares with celiac disease the potential for ataxia and other neurological damage. Many people will embark on the gluten-free diet because they know gluten makes them ill but without ever being able to distinguish which one they have. And at the end of the day it may not make any difference to know which you have since both demand total gluten abstinence. I'm afraid a lot of people are under the impression that if the have NCGS instead of celiac disease they can be more relaxed about gluten exposure. Sorry, I wish I could answer your question more completely.

 

[trents]

Keep us posted.