Struggling and in need of support from people who can relate!

[kabons]

Hey guys,

Been crying for a couple hours after a discouraging Dr appointment and need some encouragement. I've been gluten-free for 5 years. I made the big mistake of going gluten-free before getting fully tested. Despite having most of the classic celiac symptoms and a very positive blood test result, I never received an actual diagnosis because I could never do the scope. I have severe reactions to small amounts of gluten (intense pain, vomiting, diarrhea...). Over time, I've realized more and more how much it affects my experience with healthcare to not have a diagnosis. 

For the past year I've been struggling with lots of digestive issues. I don't know if it's Celiac related, but Dr's aren't even willing to consider that as a factor. I've been told multiple times I can't possibly have Celiac because I wouldn't have digestive issues anymore after 5yrs off gluten. I'm told constantly I just have IBS. It seems all the medical professionals I've seen are completely clueless about how Celiac can affect people in the long-run. What's worse, I don't even feel confident saying I have Celiac w/o a diagnosis and with no history in my family. This further makes me feel like my experience is somehow not valid.

Any words of advice or encouragement? 

[captaincrab55]

Sounds like some other food or foods may be bothering you as well as gluten.     It only took 10 years to figure out the 7th food that was bothering me.

 

[RMJ]

Have you been retested for celiac antibodies?  Are they  back in the normal range?

I was diagnosed by blood tests plus biopsy, but I am the only one in my family with celiac.  Family history isn’t necessary to have this disease.

 

 

[GFinDC]

Right, other food intolerances can cause plenty of GI symptoms.  The best way to find them is through an elimination diet IMHO.

[kabons]

  On 10/6/2019 at 12:15 AM, GFinDC said:

Right, other food intolerances can cause plenty of GI symptoms.  The best way to find them is through an elimination diet IMHO.

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Yup, tried that already this summer. Didn't reveal anything. 

[captaincrab55]

  On 10/6/2019 at 1:05 AM, kabons said:

Yup, tried that already this summer. Didn't reveal anything. 

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So you did a 90 elimination diet and you're positive that you gave it enough time?    Remember it took me 10 years to find relief.    Yes, it took 10 years to figure out 7 foods that are gluten free that were causing GI issues.   It takes a long time when your body has issues with multiple foods.

 

[kareng]

Wait..... did you have a really high antibody test?  And is the current one low or negative?  That would be pretty conclusive for Celiac.  

Edited October 6, 2019 by kareng

[cyclinglady]

Did you keep copies of your initial celiac disease blood test?  (This is so critical for all people to keep copies of all their medical records.)

If you did not and want a firm diagnosis, you should consider a gluten challenge.  If that seems like a terrible choice for you, consider the Fasano diet for the next three months or so.  Do not eat out.  This will help you determine if you are getting gluten exposures.  If your symptoms do not resolve, you might assume that it is not celiac disease as the culprit of your current symptoms.  Keeping a food and symptom journal can help too.  Doing both these things and documenting them may help your case when presenting to your doctor and asking for further investigation beyond celiac disease (Crohn’s, UC, SIBO, low enzymes, gallbladder, etc.). 

I did the Fasano diet a while ago.  It did not resolve my symptoms.  Turns out a repeat endoscopy revealed autoimmune gastritis which developed after my initial celiac disease diagnosis five years earlier.  My celiac disease was in remission.  

[kabons]

  On 10/6/2019 at 12:00 AM, RMJ said:

Have you been retested for celiac antibodies?  Are they  back in the normal range?

I was diagnosed by blood tests plus biopsy, but I am the only one in my family with celiac.  Family history isn’t necessary to have this disease.

 

 

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Good to know about the family history thing.

So, this too is complicated. Because I wasn't willing to do the gluten challenge, the gatro I was seeing (who I now think is pretty unknowledgeable about celiac) gave me one other option for diagnosis. We re-tested after a month of a gluten-free diet, and he said the antibodies should some back way lower if I actually was celiac. Well, they came back slightly lower and he said that meant I wasn't celiac. He then proceeded to tell me I have IBS and gave me a pamphlet about fibre. Even though at that time my main problem wasn't GI symptoms but lots of weight loss, joint pain etc. ?

Anyway, I feel pretty stuck about taking the blood test again. I'm afraid that no matter what the result is, they'll use it against me. If it's low, they'll simply say I'm not celiac. If it's high, they'll say I'm not celiac because it should be lower by now. Feels like a lose lose situation?

[kabons]

  On 10/6/2019 at 2:43 PM, cyclinglady said:

Did you keep copies of your initial celiac disease blood test?  (This is so critical for all people to keep copies of all their medical records.)

If you did not and want a firm diagnosis, you should consider a gluten challenge.  If that seems like a terrible choice for you, consider the Fasano diet for the next three months or so.  Do not eat out.  This will help you determine if you are getting gluten exposures.  If your symptoms do not resolve, you might assume that it is not celiac disease as the culprit of your current symptoms.  Keeping a food and symptom journal can help too.  Doing both these things and documenting them may help your case when presenting to your doctor and asking for further investigation beyond celiac disease (Crohn’s, UC, SIBO, low enzymes, gallbladder, etc.). 

I did the Fasano diet a while ago.  It did not resolve my symptoms.  Turns out a repeat endoscopy revealed autoimmune gastritis which developed after my initial celiac disease diagnosis five years earlier.  My celiac disease was in remission.  

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The Fasano is a good idea. It's a new thing to try.

I did keep a copy of my blood test, but it doesn't seem to carry a lot of weight for medical professionals (even though it was really high?).

Question about SIBO - Is that a scientific thing? I asked my Dr yesterday about the possibility of bacterial overgrowth and he practically interrupted me declaring, "That sounds like something a naturopath would tell you about. They make a lot of money with stuff like that. There is no scientific backing of that whatsoever." Very strange, aggressive response considering I didn't hear about it through a naturopath ???

[kabons]

  On 10/6/2019 at 2:58 AM, kareng said:

Wait..... did you have a really high antibody test?  And is the current one low or negative?  That would be pretty conclusive for Celiac.  

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Yup, had a high antibody. The gastro who was working with me (very rude, ignorant guy) tested a second time two months after I first went off gluten. The antibodies went down a little, but he said they should have gone down a lot more if I was truly Celiac. He then told me I have IBS and gave me a pamphlet about fibre. Which is pretty messed up because GI symptoms were the least of my concerns at the time. 

Anyway, this is a bit of a rant, but my experience has been that if you don't get the scope done to conclude Celiac, Drs don't know what to do with the blood results. If they're low or high the second time, they'll use them to say that you're not actually Celiac.

This is especially annoying as I have a friend who was diagnosed a few years after me (positive scope, gold seal). Now she gets yearly check-ups. So far, her antibody levels have never dropped significantly... so they tell her she needs to be more careful w/ exposure. It doesn't make sense to me that my high levels the second time would indicate no Celiac, and hers indicates really bad, active Celiac? The worst part is she's not symptomatic; she gets way more medical attention but doesn't suffer with pain etc. Haha, can you tell I'm becoming bitter? 

[cyclinglady]

  On 10/6/2019 at 4:47 PM, kabons said:

The Fasano is a good idea. It's a new thing to try.

I did keep a copy of my blood test, but it doesn't seem to carry a lot of weight for medical professionals (even though it was really high?).

Question about SIBO - Is that a scientific thing? I asked my Dr yesterday about the possibility of bacterial overgrowth and he practically interrupted me declaring, "That sounds like something a naturopath would tell you about. They make a lot of money with stuff like that. There is no scientific backing of that whatsoever." Very strange, aggressive response considering I didn't hear about it through a naturopath ???

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SIBO is real.  My GI brought it up when I was experiencing all those symptoms.  

https://www.hopkinsmedicine.org/gastroenterology_hepatology/diseases_conditions/small_large_intestine/small-intestinal-bacterial-overgrowth.html

https://www.gastro.org/on-demand/small-bowel-bacterial-overgrowth

https://www.gastro.org/on-demand/small-bowel-bacterial-overgrowth