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Decided I Want To Be Tested For celiac disease

Brittany85

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Brittany85 Rookie
Brittany85
Posted

I've attempted to be gluten free for almost a month and I know I have to be on full gluten for a certain amount of time for testing. I'm going to schedule an appt with my midwife for testing (just because I have a good relationship with her, my primary moved recently, and she offers lab stuff). So my questions are:

What do I need to do to prepare for testing? I.e., how to go back on gluten "properly," what I should do to minimize the s$#&tiness of glutenization, etc.

What types of tests should I ask for? My mother tested positive but I think it was only a blood test, not a biopsy.

I'm breastfeeding. Are there additional considerations because of this?

Any other tips for me? I'm sure there are threads about this, but I'm not sure what I would search for...

Thank you for your replies.

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eatmeat4good Enthusiast
eatmeat4good
Posted

I have read that you have to eat the equivalent of 4 slices of bread a day for at least 3 months. The ask for a full Celiac Panel and an Endoscopy with biopsy to diagnose Celiac.

If you already know the s$#&tiness of getting gluten, then I fear you are in for it if you challenge 3 months. There are threads on here about how to deal with gluten symptoms but most of them are only symptom treating with OTC meds that you likely cannot take due to breastfeeding. Like Pepto Bismol, Advil, Tylenol. I hope you are not one of those who end up testing negative at the end of it and yet find that you have to be gluten free.

The midwife won't be able to help with the biopsy but she may be able to refer you to a Gastroenterologist. Depends how thorough you want your testing to be.

It sounds like you need a solid diagnosis to be able to stay gluten free.

Gluten avoidance makes you feel better right? Why not go with it? The one worry I would have, aside from you feeling s$#&ty, is that if you are Celiac and nursing, then 3 full months of eating gluten could be interfere with your absorption of vitamins and nutrients and your body is already being extra challenged by the nursing. I'm not sure but I would worry as to whether it would interfere with your nursing. It might effect production of milk or cause you to feel like you have the flu for the whole time you are eating it. I'm not trying to discourage you if this is right for you. But I just wanted to mention those few things for you to consider.

Maybe someone else will have other suggestions.

Brittany85 Rookie
Brittany85
Posted
  • Author

Thank you for your reply. I just want to know what I'm dealing with, that's why I want to be tested. I wonder if the symptoms will be different than what I was dealing with before changing my diet... I'll continue doing research.

Thank you very much. I have so much to learn.

eatmeat4good Enthusiast
eatmeat4good
Posted

What were you dealing with before changing your diet?

Brittany85 Rookie
Brittany85
Posted
  • Author

Fatigue, constant constipation with occasional diarrhea, moodiness; spells (what I now recognize to be glutenization) of cold sweats, dizziness, nausea, rapid heartrate. Also bloating, stomach aches, and a rash on my arms that started to clear up after quitting gluten.

ravenwoodglass Mentor
ravenwoodglass
Posted

Fatigue, constant constipation with occasional diarrhea, moodiness; spells (what I now recognize to be glutenization) of cold sweats, dizziness, nausea, rapid heartrate. Also bloating, stomach aches, and a rash on my arms that started to clear up after quitting gluten.

If the rash was incredibly itchy and left purplish scars that are slow to fade it might be DH. If you have DH you have celiac, period no more testing needed. You may want to consider eating enough gluten for the rash to come back and then seeing a derm to get it biopsied. Do make sure that the derm is familiar with biopsies for DH as they need to biopsy next to an active lesion not the lesions itself.

If you become very ill from the challenge some doctors will diagnose so keep your doctor in the loop on the challenge. Also talk to your midwife or the LaLeche league about it to ensure that the challenge doesn't impact your ability to breastfeed if that is your little one's sole source of nourishment.

Brittany85 Rookie
Brittany85
Posted
  • Author

If the rash was incredibly itchy and left purplish scars that are slow to fade it might be DH. If you have DH you have celiac, period no more testing needed. You may want to consider eating enough gluten for the rash to come back and then seeing a derm to get it biopsied. Do make sure that the derm is familiar with biopsies for DH as they need to biopsy next to an active lesion not the lesions itself.

If you become very ill from the challenge some doctors will diagnose so keep your doctor in the loop on the challenge. Also talk to your midwife or the LaLeche league about it to ensure that the challenge doesn't impact your ability to breastfeed if that is your little one's sole source of nourishment.

Great information! Thank you! Is there a certain form of gluten that is the most effective in this challenge?

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ciamarie Rookie
ciamarie
Posted

Great information! Thank you! Is there a certain form of gluten that is the most effective in this challenge?

Just from what I've picked up from baking, etc. I'd say the higher gluten flours would be used in the 'artisan' type breads, and possibly pasta. The lower gluten flours would be used in cakes.

Brittany85 Rookie
Brittany85
Posted
  • Author

Just from what I've picked up from baking, etc. I'd say the higher gluten flours would be used in the 'artisan' type breads, and possibly pasta. The lower gluten flours would be used in cakes.

Thank you so much.

eatmeat4good Enthusiast
eatmeat4good
Posted

Ugh, the rash and all your symptoms certainly sound like Celiac. I agree with biopsy of the rash if you can. It might be the quickest way to get diagnosed. You don't wanna feel like crap for the next 3 months. But I have also read that if you are not eating gluten your rash may test negative. good luck

researchmomma Contributor
researchmomma
Posted

You also mentioned that your Mom tested positive. Is she diagnosed with Celiac? My daughter went back to eating gluten for two weeks and she couldn't take it (neither could we because her moods were horrible).

I wish you good luck and keep us posted.

Brittany85 Rookie
Brittany85
Posted
  • Author

You also mentioned that your Mom tested positive. Is she diagnosed with Celiac? My daughter went back to eating gluten for two weeks and she couldn't take it (neither could we because her moods were horrible).

I wish you good luck and keep us posted.

Yes, she was diagnosed. She's helping me through this. It's been two whole days of being back on gluten and I feel just like I did before: aweful. I'm really trying to make the rash flare up to shorten this ordeal. It's never gotten really bad, though. Hmmm....

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    • rei.b
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      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
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      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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