Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Decided I Want To Be Tested For celiac disease

Brittany85

Recommended Posts

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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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?

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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....

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      127,833
    • Most Online (within 30 mins)
      7,748
    Lucy20
    Newest Member
    Lucy20
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.4k
  • Celiac.com Sponsor (A22):



  • Who's Online (See full list)

  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • knitty kitty
      Hidden Gluten in distilled vinegar

      By knitty kitty · Posted

      @Manaan2,  I'm so happy to hear you're going to try thiamine and magnesium!  Do let us know the results!   You may want to add a B 50 Complex with two meals of the day to help boost absorption.  Thiamine interacts with each of the other B vitamins which are all water soluble.   When supplementing magnesium, make sure to get sufficient calcium.  Calcium and magnesium need to be kept in balance.  If you choose a calcium supplement, take two hours apart from magnesium as they compete for absorption.  Take Calcium with Vitamin D.  Vitamin D helps calm the immune system.   For pain, I use a combination of thiamine, B12 Cobalamine, and Pyridoxine B6.  These three vitamins together have analgesic effects.  My preferred brand is "GSG 12X Takeda ALINAMIN EX Plus Vitamin B1 B6 B12 Health Supplementary from Japan 120 Tablets".  Alinamin is another form of thiamine.  It really is excellent at relieving my back pain from crushed vertebrae without side effects and no grogginess.   Look into the low histamine version of the Autoimmune Protocol Duet (Dr. Sarah Ballentyne, a Celiac herself, developed it.)  It really helps heal the intestines, too.  It's like a vacation for the digestive system.  Add foods back gradually over several weeks after feeling better.   I'm so happy to have pointed the way on your journey!  Let us know how the journey progresses! P. S. Add a Potassium supplement, too.  Potassium is another electrolyte, like magnessium, that we need.
    • Manaan2
      Hidden Gluten in distilled vinegar

      By Manaan2 · Posted

      @knitty kitty I can't thank you enough!  My husband and I already started looking into those supplements.  We definitely plan to give it a try.  We've been against the Miralax since it was originally advised by PCP, but because of the level of pain she experienced on a daily basis, we decided to try it.  We've made many attempts to gradually decrease but due to her pain and related symptoms, we've kept her on it while trying all sorts of other dietary adjustments pre and post diagnosis specific to food; so far none of those efforts have made a significant difference.  I will definitely share how she's doing along the way!
    • BIg Nodge
      Opinions on my test results/symptoms

      By BIg Nodge · Posted

      Hi, I have recently embarked on the gluten-free journey. I have what to me seems like a somewhat confusing set of test results and symptoms. I have been impressed by the accumulated knowledge and thoughtfulness as I browse this forum, so I figured I'd make a post to see if anyone can offer any insight. I know there are many posts like this from new users, so I have tried to do my baseline research first and not ask super obvious questions.  I'm 43, overall very healthy. No history of gluten sensitivity or really any of the classic GI symptoms. About three years ago I started to experience intermittent bouts of fatigue, chills/cold intolerance, and shortness of breath/air hunger (sometimes feels like a hollowness in my chest, hard to describe). The symptoms over time have become fairly significant, though not debilitating, I am able to exercise regularly and am fairly physically active, continue to perform well at work. But for example I have gone from someone who consistently ran hot, was always cranking the a/c, to someone who wears a down vest inside at work in winter and get chills if the a/c even blows on me in summer. I get tired and lose energy even when getting decent amounts of sleep, and have to have my wife take over on long drives that I could previously handle with no problems. More generally when I am experiencing these symptoms they seem to crowd out space in my mind for focusing on my family, my hobbies/activities etc, I sort of withdraw into myself.   I happened to be experiencing these symptoms during an annual physical with my PCP a few years ago, he observed post nasal drip and suggested it was allergies and that I treat it with claritin. At first it seemed to respond to claritin (though not zyrtex), but over time I became unsatisfied with that answer. There didn't seem to be any seasonal rhyme or reason to my symptoms, and I felt like I was on an endless loop of taking claritin, then stopping, not being sure if it was even making a difference. I did eventually get allergy tests and found modest allergies to dust and pollen, which didn't feel like a smoking gun.  I then started seeing a natural medicine doctor who was much more willing to explore my symptoms via testing. The first thing that came back abnormal was elevated thyroid peroxidase antibodies/TPOs, 137 IU/mL vs a reference range of <9. At the same time my thyroid panel showed normal thyroid hormone levels. So it appears my immune system is attacking my thyroid even though it is working fine. I got a thyroid ultrasound at the time, it was clear, but with some abnormalities such that they suggested I get is scanned again in a year. These are certainly risk factors for a thyroid autoimmune disease, though my thyroid seems to be working fine for now.  From here my doctor considered celiac due to the murky thyroid/celiac links, so we did a panel. Results were as follows: TT IGA <1 U/ml, TT IGG <1 U/ml, deamidated gliadin IGA 24.6 U/ml, deamidated gliadin IGG <1 U/ml, IGAs 170 mg/dL. Readings greater than 15 considered high by my lab for the first four, my IGAs are within reference range. So basically just the deamidated IGA popped, but my IGAs are normal. I also notice on the tests that my thyroglobulin was high, 86.7 ng/ml vs a range of 2.8 - 40.9.  My doctor suggested that it certainly wasn't conclusive for celiac, but it was possible, and likely that I have some sort of gluten sensitivity. She suggested going gluten free and seeing how I felt as opposed to doing a biopsy. The best theory I can come up with is perhaps I am a silent celiac or just have a gluten sensitivity that doesn't produce immediate GI symptoms, but is still doing damage and over time has caused leaky gut. So now gluten is getting into my blood, and my immune system is attacking it but also mistakingly attacking my thyroid.  So that's what I did, went gluten free in October. It's been about four months, and I am really not feeling any difference. I still get the same symptoms that come and go. My bowel movements may be a bit more regular, but it was never a major issue before so I would consider that a minor improvement. I know that it can take a while to see improvements, and I am going to remain gluten-free and see how I feel. But I am definitely questioning whether I really understand what is going on, and am open to any thoughts or suggestions from the forum. Sometimes I wish I just went ahead with the biopsy before going gluten-free. While I would certainly be down to start drinking IPAs again ahead of a biopsy, you know, for science, I feel like at this point I would be throwing away four months of work and am better off staying the course and seeing what happens. But I'm really not sure.  I know there is a lot of thyroid knowledge on these boards, along with the celiac expertise, so I'm curious if this resonates with anyone's experience. And I'm interested in what sort of timelines people have experienced in terms of feeling improvements for some of these non-GI symptoms like chills, SOB, brain fog etc. Thanks in advance. 
    • cameo674
      Testing positive for antibodies, are there visible changes to the colon that could be seen without a biopsy?

      By cameo674 · Posted

      Does it taste like black licorice?  It said it was chewable.  I do not like that flavor.     Since the burn at the back of my throat is there everyday, I usually only take something when it is unbearable and keeping me from ADL especially sleep.  
    • Scott Adams
      Nandos improper preparion celiac childrens food

      By Scott Adams · Posted

      Your concerns about Nando's cross-contamination practices are valid and important for the celiac community. It's disappointing that Nando's does not have stricter protocols for children's portions, especially given the risk of cross-contact with gluten-containing items like garlic bread. Cooking gluten-free items on shared surfaces, even if cleaned, is not safe for individuals with celiac disease, as even trace amounts of gluten can cause harm. While the adult butterfly chicken may be a safer option, the inconsistency in practices for children's meals is concerning. It's frustrating that Nando's headquarters did not take responsibility, but sharing your experience raises awareness and may encourage them to improve their protocols. Consider reaching out to celiac advocacy organizations to amplify your concerns and push for better standards. Always double-check with staff and emphasize the importance of avoiding cross-contamination when dining out.
×
×
  • Create New...