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Celiac Mayoclinic

watata

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watata Apprentice
watata
Posted

I just spent two weeks at mayo having every test in the book. Symptoms going in were severe nausea, bloating, pelvic pain, migraines, tachycardia, and nerve pain. Was sent by my endocrine for possible autonomic nerve disorder. I also have hypothyroidism, had an episode of secondary adrenal insufficiency, and interstitial cystitis. Well after being put through the ringer I was told I had a 4.7 cm mass in my pelvis and maybe celiac disease. The mass was followed up on and determined to be a complex ovarian cyst (most likely not cancerous per bloodwork)The cyst is being followed by my local docs and most likely my ovary will be removed.

The celiac was suspected due to my biopsy taken during my endoscopy. It came back as damaged villi and inflammation. They then did blood work which IGA was high normal .1 away from being positive and the IGG was positive but a weak positive. Celiac Gene pairs were present. Doc said to go gluten free and sent me to a dietitian. They said repeat tests to see if gluten free diet was putting blood work into normal range and possible retest of biopsy to see if it is healing. What more do they need to make an "official" diagnosis. they said if the diet made the nausea, bloating better that they would not do ever let me go back on gluten again, but if blood work didn't go down and symptoms stayed bad and intestines were not healing they may let me do a gluten challenge in the future. I just don't understand how certain other than every test being positive do they need. Yes one of my tests was negative, but the biopsy, gene pairs and igg was all positive. Anyone else have all the signs and almost all the proof and still NOT have celiac?

Thanks

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pricklypear1971 Community Regular
pricklypear1971
Posted

I think there must be some miscommunication somewhere because with all the above I don't think any sane doc would doubt your celiac status. Then again, I've heard a lot of insane things lately. They probably are having niggling doubts since your bloodwork was weak positive. I don't know why docs do that, but some think that - in spite of the biopsy and genetics.

I'd get a second opinion if they ask you to do a gluten challenge. I'd get off and stay off ASAP.

pain*in*my*gut Apprentice
pain*in*my*gut
Posted

I think there must be some miscommunication somewhere because with all the above I don't think any sane doc would doubt your celiac status. Then again, I've heard a lot of insane things lately. They probably are having niggling doubts since your bloodwork was weak positive. I don't know why docs do that, but some think that - in spite of the biopsy and genetics.

I'd get a second opinion if they ask you to do a gluten challenge. I'd get off and stay off ASAP.

Ditto. You have Celiac disease. Plus, you need a new doc. :angry:

watata Apprentice
watata
Posted
  • Author

But after years of wrong diagnoses I thought that Mayo would be the place to go. Although I have little faith in any doctor after all I have been put through in my short little life.

ravenwoodglass Mentor
ravenwoodglass
Posted

I agree you are celiac and it is likely that you will do a few inadvertent 'challenges' early on until you get used to everything we have to do. Some doctors consider the diet so restrictive that they hesitate to diagnose folks not realizing that the diet is really doable and the change in our health is well worth the hassle of the diet. If your strict with the diet those numbers will go down and the intestines will heal so all in all the plan is a good one with the exception that the doctors are still 'iffy' on diagnosing.

nora-n Rookie
nora-n
Posted

If they would have taken the new very spicific deaminated gliadin test, they would have been more sure....but they still use the old almost-specific ttg IgA and ttg-IgG tests.

Mayo is not so famous for celiac and thyroid....

you must know that IgG antibdies take up to a year to go down. IgA type antibodies go down quicker.

What was your total IgA?

The test results for IgA type tests totally depend on the total IgA , and if your total IgA is lowish, then the ttg IgA reflects that.

Anyway, your biopsy and gene test and response to the diet would be enough for a diagnosis.

Usually the biopsy is enough alone, without any other tests.

JoshB Apprentice
JoshB
Posted

Deaminated gliadin doesn't seems to be more specific or sensitive than ELISA TtG-IgA. It's just the new kid on the block. Though there is a little evidence that sometimes it will show a positive in young children that other tests would miss.

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Skylark Collaborator
Skylark
Posted

Mayo clinic is famous for conservative, accurate medicine. People with all sorts of rare diseases end up at Mayo clinic so the doctors are trying to rule out diseases that you and I may never have even heard of. You're a complicated case with the endocrine trouble and ovarian cyst and the results are borderline by the strict definition of celiac, so they want to absolutely sure they haven't missed some other problem. With evidence of improvement gluten-free, it sounds like they'll diagnose celiac. I think you're in good hands. B)

bartfull Rising Star
bartfull
Posted

I agree with Skylark. When nobody else can figure out what is wrong with a person, they turn to Mayo. They are so thorough, and they WILL get to the bottom of your problem. I think they know there ARE other things that can harm the villi, and they want to be sure they don't miss something. Relax and let them work their magic. I'd be willing to bet they will have you on the road to recovery soon.

watata Apprentice
watata
Posted
  • Author

I wanted to believe that Mayo would help me. I am hoping that their celiac theory is the answer as I really have no further follow up at the mayo clinic. They kind of said try this and see what happens. Follow up with your doc back home or call us. I felt rushed out the door when they had a possible answer. They were also more than happy to have my local docs handle my "cyst" I really felt like a number and not much of a patient there. I was born there when my dad was in residency there, and had not been back since I moved away when I was 2. I had high hopes as to solving my complex medical history and came home with very little more than I had gone in with. They were thorough on the gastro end but barely touched the surface of the endo/adrenal/neuro issues. Maybe another time if symptoms persist. For now I will continue with the hope that gluten free is the key and once I have the cyst removed things will improve (wishful thinking, but I have to start somewhere) 11 days gluten free... nausea improved a bit, bloating gone, constipation still an issue and maybe unrelated. Any ideas for relieving? Thanks for all your input, this is a great community.

bartfull Rising Star
bartfull
Posted

There are SO many things that could be causing your symptoms. You might have a problem with corn, soy, dairy, nuts, nightshade veggies like potatoes, tomatoes and eggplant,or even other grains like rice or quinoa. I think the best thing you could do right now is eat strictly whole foods. Plain cooked meats, fresh veggies, washed well and lightly steamed, and some low sugar fruits, like blueberries. Then, if this diet makes you start feeling better, start slowly adding foods back in. Maybe start by eating potatoes with you meals for one week. If you have no reaction, you can cross nightshades off the "bad" list. That's how I found out that I can't eat corn - and my corn problem is so bad that all I have to do now is take one Advil and my psoriasis and insomnia come back.

Another problem you might have is yeast overgrowth. If you go on a paleo-type diet, you will be taking in very few carbs and no sugar - the stuff yeast feeds on. Add some probiotics to your diet, and eventually any yeast in your system should start getting under control. I found some at my healthfood store that is a liquid. It is by American Health, and it contains no gluten, yeast, wheat, corn, soy, eggs, grapefruit, starch, preservatives, artificial color or flavor, and no sodium.

If you have damage to your small intestine, whether it be from gluten, corn, or any other source, you will need to take supplements, and THAT can be a problem too. Most pills of any type have either wheat or corn in them.

Thank God for the internet and all of the info available. Just keep doing research, and if you have any questions, this is a great place to ask. The people on this site have probably literally saved lives with their knowledge and good advice.

And support. When it seems that it is just getting too hard, and you want to give up, just come on over here and do a little whining! I did, and instead of being told to "grow up", these wonderful people said they UNDERSTAND, and they gave me the extra strength to get through my weak moments.

Skylark Collaborator
Skylark
Posted

For now I will continue with the hope that gluten free is the key and once I have the cyst removed things will improve (wishful thinking, but I have to start somewhere) 11 days gluten free... nausea improved a bit, bloating gone, constipation still an issue and maybe unrelated. Any ideas for relieving? Thanks for all your input, this is a great community.

Just stick to gluten-free, and eliminate dairy for a bit as well. Lots of newly diagnosed celiacs can't eat dairy at first. It can take a few months to feel better if you really are celiac. Your immune system has to calm down and your intestines have to start to heal.

watata Apprentice
watata
Posted
  • Author

Thanks for your quick responses and encouragement! I will try going down to the basics and add things back in and see if that helps. Thanks!

nora-n Rookie
nora-n
Posted

Severe constipation, nerve pain, adrenal issues, hypothyroidism all are typical presentations of celiac too.

The list is even longer.

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