Jump to content
  • 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

Possible Celiac? Questions To Ask Doctor.


Jessi81

Recommended Posts

Jessi81 Newbie

Hi, I'm Jessi and new here and just kind of stumbled across the fact that I might be celiac.  I miscarried for my third time last Friday (had 2 miscarriages, 1 healthy now 2 year old with Clomid, and then got pregnant after my cycle returned after doing a whole 30/gluten-free diet for a month but went back to eating normally after the month) and have an upcoming appointment with my OB/GYN's office this coming Friday to talk about possible testing.  She mentioned clotting disorders but that really doesn't fit me or my family history that well.  I got the gluten free bible a few weeks ago in a lot of books that I just kind of threw in because I know I have wheat sensitivities that give me migraines and I should probably try to avoid wheat but I've ignored it for the most part because I'd rather have my wheat and deal with a migraines once in a while... ha.  Well, I was flipping through the book on Saturday, right after I miscarried, and noticed it said that those with untreated celiac disease have a 50% chance of miscarriage.  I was ready to purge the house right then and there.  I got on the internet and started googling symptoms, and found that you have to still be eating gluten when you're tested so haven't purged the house yet.  I'm making a list of symptoms to bring into the doctor and I'll list them here, but what questions do I need to ask her, what blood draws do I need to request?  Do I need to wait for an endoscopy if I get multiple positive blood tests?  Does the house need to be gluten free, I've seen people who threw out their blender/pots and pans/etc.? If so, how do I convince my husband?

 

Gas-yeah, even my parents teased me about this as a kid.

Chronic constipation-again, since I was a kid.

Steatorrhea-I'm confused on what actually qualifies this one... if it is just poop that floats, yes.

Tingling in hands or feet-sometimes.

Delayed puberty-I didn't hit puberty until 16ish.

Migraine headaches-since I was 21.

Infertility-I have irregular periods, get pregnant when I *do* ovulate but that is only a few times a year it seems.

Miscarriages-three, 10 weeks, 5 weeks, almost 11 weeks.

Depression-I don't think this is extreme but I have had some depression at different times in my life, but it has been around difficult things in life too (abuse, miscarriages, marital problems, etc.)

Dermatitis herpetiformis-again, I am not positive on this one but when I read some descriptions of it it could definitely be a mild form of it.  I get small hard, blister-like, bumps on my knuckles/fingers that itch like crazy!! They went away on their own after a couple of months... then a year later I got it again.  Sadly, they just went away.  More sadly, I had it last time I went to the doctor and didn't mention it because well most doctors don't know what most rashes are and I knew it went away on its own last time but it would have been nice for her to have seen them a few months ago even if she didn't know what they were so when I mentioned it this time she could have looked it up.  Duh.

Hypothyroidisim-I had postpartum thyroiditis after the birth of my 2 year old, it cleared up around October of last year when she was about 17 months.

Late menarche-Do they mean I didn't get mine until 16 or my cycles are longer like 35+ days versus the normal 28 to 30?

Easy bruising-somewhat and my gums bleed if I don't have dark green leafy vegetables on a fairly frequent basis, vitamin K deficiency?

ADHD-Again, never diagnosed but it seems to run in my family.  I'm someone who goes to sleep easier after drinking a mountain dew...

Voracious appetite-uh, yeah. I work a desk job and out eat my construction working husband every time while staying a healthy weight, except when pregnant it amps up more and I gain a lot of weight.

Insomnia-had problems since I was a teen.  Melatonin is my new friend.

Stomach rumbling-Again, people have made comments on how loud my stomach is...

Blacking out-I didn't see this on any official list of symptoms but several stories on here.  I've been losing my vision/blacking out off and on since I was 10.  It is worse when I'm stressed emotionally or physically.  I was also told by doctors that they couldn't find anything wrong and I just stood up too quick.  I've had a ton of cardio and pulmonary tests done and everything came back fine. 

 

Okay, I think that is it.  Thank you all for being such a great resource!


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



Celiac.com Sponsor (A8-M):



kareng Grand Master

I'm sorry about the miscarriages.  That is horrible.

 

You might want to take a few easy to read things to your doctor.  Make sure they are from reliable sources (and that prints) like a medical facility.  Maybe highlight the part about miscarriages.

 

Open Original Shared Link

 

 

Open Original Shared Link

nvsmom Community Regular

Welcome to the board.

 

Those symptoms could be celiac disease... and I'm very sorry for your losses. I would say that it is worth it for you to request celiac testing. This report has a LOT of info and lists the full celiac panel on page 12:

Open Original Shared Link

 

I would hazard to guess that you might still be hypothyroid. Many of your symptoms point that way, I actually think almost all of your symptoms could be attributed to hypothyroidism too.  Have you had it checked recently? 

 

I have hypothyroidism and I have found that I still have ALL my symptoms when my TSH is firmly in the normal range (ie. a TSH of 2.5 when the normal reference range for my lab is 0.2-6.0).  People with hypothyroidism often do not feel their best even if they are in the lab's "normal" range, possibly because those ranges are for 95% of the population yet 10% of the population is thought to have hypothyroidism - that means that about half of all hypothyroid cases fall within normal ranges.

 

Anyway, some tests for the thyroid are:

TSH - should be near a 1

Free T4 and Free T3 - should be in the 50-75% range of your lab's normal reference range

TPO Ab - should be very low

 

I hope you feel better soon.

Jessi81 Newbie

Thank you both for the links.

 

I had a TSH, Free T3 and T4 drawn a month before I got pregnant and everything was normal.  I was feeling hyperthyroid on 50 mcg of Synthroid and I went off of it for a few months before that last blood draw.  So, I'm pretty sure it has normalized or is very mild if at all.  I'm not sure what the Free T3 or T4 were, I didn't ask.  I'm not sure if they did the TPO Ab or not.  I'll try to remember to get a copy of the labs when I go in.  The TSH was 1.3 because I did ask what that was and I believe range for the lab was 0.45 to 4.5.  Hypothyroidism does run in my family though.  My mom and sister are both on long-term medication for it. 

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - cristiana replied to Charlie1946's topic in Related Issues & Disorders
      10

      Severe severe mouth pain

    2. - trents replied to Charlie1946's topic in Related Issues & Disorders
      10

      Severe severe mouth pain

    3. - Charlie1946 replied to Charlie1946's topic in Related Issues & Disorders
      10

      Severe severe mouth pain

    4. - Charlie1946 replied to Charlie1946's topic in Related Issues & Disorders
      10

      Severe severe mouth pain

    5. - knitty kitty replied to Charlie1946's topic in Related Issues & Disorders
      10

      Severe severe mouth pain

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,900
    • Most Online (within 30 mins)
      7,748

    sai4a
    Newest Member
    sai4a
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • cristiana
      Hi @Charlie1946 I am so sorry to hear you are suffering with this problem.   Just a few other thoughts.  I had debilitating anxiety prior to my diagnosis.  I was never admitted to a hospital but thankfully had a lot of support from friends and family, and found a couple of publications contained really helpful advice:  for depression, The Depression Cure: The Six-Step Programme to Beat Depression Without Drugs by Dr Steve Llardi, and for debilitating anxiety, At Last A Life by Paul David.  Both can be ordered online, there is also a website for the latter.  If you are deficient in or have low iron or B12 this can cause or worsen mental health issues.  I am sure my own issues were caused by long-term deficiencies.   If you can get your blood tested, it would be useful.  In the case of iron, make sure you only supplement if you have a deficiency, and levels can be monitored, as too much iron can be dangerous. If you have burning mouth issues, very bad TMJ or neuralgia,  I understand the pain can be managed by the use of a certain class of medication like amitriptyline, which is also used to treat depression.  But there again, it is possible with the correct diet and supplementation these issues might improve? I do hope that you find relief soon. Cristiana
    • trents
      @Charlie1946, as an alternative to milk-based protein shakes, let me suggest whey protein. Whey and casein are the two main proteins found in milk but whey doesn't cause issues like casein can for celiacs. Concerning your question about celiac safe mental health facilities, unfortunately, healthcare facilities in general do not have good reputations for being celiac safe. Most celiacs find that they need to depend on family members to advocate for them diligently or bring in food from the outside. Training of staff is inconsistent and there is the issue of turnover and also cross contamination.
    • Charlie1946
      @knitty kitty are you kidding?  I had no idea about the casein!! No one ever mentioned that to me at all!! I basically live off that milk! I have also wondered if I have Sjorgen's , but I haven't been to the doctor yet. Can you get the TTFD over the counter? I do have dysphasia and I have lysine I just haven't been good about taking it. I am so glad I found this group and all of you with all this helpful information!! I thought I was going crazy!!  I have sebaceous hyperplasia too- is that related to Celiac?  OH , and I wanted to ask if there is a site where I could find information on mental health issues , with celiac safe facilities??
    • Charlie1946
      @trents, Hi, thank you for the reply, I used to be pretty good at taking my vitamins and supplements, because I also have PCOS, I have Barrett's esophagus, it's just too expensive to have it stretched all the time, and I also get kinda panicked when trying to swallow pills because of getting choked a lot before.  I think maybe the thrush made it worse, I just can't figure out why I can't get it to go away 
    • knitty kitty
      Oh, my dear!  Get off that Fairlife chocolate protein shake!  That's got milk in it!  Egads! Some people with Celiac disease react to the protein Casein in dairy the same as to gluten with the inflammation and antibodies and all.  Reacting to Casein is not the same as lactose intolerance.  Damaged villi are incapable of producing lactAse, the enzyme that digests lactOse, the sugar in dairy.  If the villi grow back, they can resume making lactase again.   I react to casein and lactose both.  I get sores in my mouth and coated tongue, and inflammation, my Dermatitis Herpetiformis flares up, I get cold sores or shingles, and TMJ pain, well, joint pain in general, and my brain health is really affected, depression and anxiety.  So dairy is a really scary horror movie.     I take Benfotiamine and Thiamine TTFD  (tetrahydrofurfuryl disulfide).  These have anti-viral properties.   I've had chicken pox/shingles, and I also harbor the cold sore herpes virus which traveled to one eye through a nerve. It's broken now.  I had really bad nerve pain in my check at the time, then it turned into Bell's Palsy.  Thiamine TTFD helped clear up the dysphagia I was also experiencing then.  I took lots of Lysine to fight the herpes viruses as well.  Between the Thiamine TTFD and the Lysine, and avoiding dairy, mine stays dormant for the most part.   I also take a B Complex, and Magnesium Threonate to help the Thiamine TTFD work, Vitamin C, Vitamins A and D, and Zinc supplements to help Thiamine TTFD fight off those viruses. I have Sjogren's so I understand dry eye and mouth.  I found including Omega Threes, healthy fats, improved my problem.  You know how oil floats on top of water?  That's going on in our body, too.  Flaxseed oil supplements, and flaxseed oil to use on food is one way I increased my Omega Threes.  Choline and sunflower seed oil supplements are other choices I've tried.  Eat real food!  Eat fresh vegetables and fruit!  I had cooked stew in a crockpot until super mushy so I could chew and swallow it without lots of pain.  I got a bag of mandarin oranges, Cuties, whatever they're called now.  They're not too acidic.  Gluten free crackers don't have any nutritional value, no vitamins.   I followed the low histamine version of the Autoimmune Protocol Diet.  The book The Paleo Approach by Dr. Sarah Ballantyne has been most helpful.  She's a Celiac herself, and the diet has been shown to improve intestinal health. I have seen liquid vitamins on line.  Thiamine TTFD comes in a capsule, but tastes really strongly of garlic, so be prepared if your Gatorade tastes funny.   
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.