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

Much More Aware?

JgeorgeSCR

By JgeorgeSCR
in Coping with Celiac Disease

Recommended Posts

JgeorgeSCR Apprentice
JgeorgeSCR
Posted

Since being sick for a few months and finally getting dx of Celiac it appears I notice other problems as well.

1.) Is it natural to think all other (even minor) problems are related to Celiac?

- Dry eyes from celiac or is allergy

2.) The body aches (like most people don't belive), but how do you know which ones are related to Celiac and which ones aren't?

3.) I can see why a doctor would think a patient is crazy if they came in with all these conditions?

4.) I guess my point is how do you tell or encourage your doctor to make sure all is ok? When I asked my PCP about my back ache, joint pain, sore throat and rash on hands he said it is probably all related? Next do all these go away on the gluten-free diet or is more or different care needed?

I meet with a new doc. next week, but I don't want to "bombard" him with all these things. In my area not many dr.s seem familiar with Celiac.

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

Celiac.com Sponsor (A8-M):


MDRB Explorer
MDRB
Posted

Hi,

celiac disease symptoms are everything and nothing. A lot of people never know they have it until it results in cancer. For those of us who do get symptoms they can differ a great deal between patients, this is why celiac disease is often so hard to diagnose.

When you go see the new doctor, give them all the information slowly and clearly, don't exaggerate, tell the doctor that you are aware that there are a lot of symptoms but that you are frustrated with feeling so bad and want an explanation. He might want to test for other auto immune disorders, or he might just want you to continue on the diet for a while to see how you improve.

GlutenGalAZ Enthusiast
GlutenGalAZ
Posted

JgeorgeSCR --

I would first recommend writing down how you are feeling and then any type of questions you want to ask your doctor. I know whenever I leave the doctors I remember something I really wanted to ask (I'm sure others do the same :) )

1.) With the Dry eyes -- Hard to tell this time of the year b/c it is allergy time.

2.) Body Aches -- People vary with their reactions and how they felt before/after going gluten free. Some people on here have mentioned they get really bad joint pain when glutened. I had body pain (back & neck) prior and then the first month officially gluten free I was really swore but then it got better. I will admit though I go to a chiropractor once every couple months to get adjusted.

3.) My mom always told me with dr appt's to keep things short and simple. The dr has other patients to see so you don't want to ramble on where you spend a lot of time on one thing and don't get to go over other stuff. I get nervous so I always ramble at appt's haha. Just keep in mind there is no stupid question.

4.) It is luck of the draw, some dr's really "listen" to the patient and some just hear what they want to hear and go from there. I would write down how many years you have felt the way you are feeling and if you notice feeling certain ways when you eat/drink certain things (some type of history).

Do you know if the new doctor you are seeing is familiar with Celiac?

I would really recommend making a list of important things you want to cover and bring a pen with you could write down notes.

Hope this helped some -- Best of luck!!

BRUMI1968 Collaborator
BRUMI1968
Posted

I actually think it's nice that your doc said those things are likely all related. Often times, they are so caught up in curing symptoms, they forget about underlying causes, and how they can be the same for many disparate manifestations.

I would consider, based just on what you said, that you might have a problem with nightshades (potato, tomato, eggplant, peppers, tobacco). They can cause joint pain and sore throat and rash - so they might be one of your issues. Just a thought.

I hear folks on here all the time noticing things they never noticed before once they quit gluten. It is probably natural - I would think imperetive to survival - that we notice what's going on in our bodies. But if it is too overwhelming, we might not be able to fight or flight or whatever...sometimes as we get healthier, we notice more and more those little things that aren't healthy with ourselves. It drives my friends nuts. I notice the smallest little thing wrong with me.

Anyway, good luck to you.

Sherri

sneezydiva Apprentice
sneezydiva
Posted
Since being sick for a few months and finally getting dx of Celiac it appears I notice other problems as well.

1.) Is it natural to think all other (even minor) problems are related to Celiac?

- Dry eyes from celiac or is allergy

2.) The body aches (like most people don't belive), but how do you know which ones are related to Celiac and which ones aren't?

3.) I can see why a doctor would think a patient is crazy if they came in with all these conditions?

4.) I guess my point is how do you tell or encourage your doctor to make sure all is ok? When I asked my PCP about my back ache, joint pain, sore throat and rash on hands he said it is probably all related? Next do all these go away on the gluten-free diet or is more or different care needed?

I meet with a new doc. next week, but I don't want to "bombard" him with all these things. In my area not many dr.s seem familiar with Celiac.

1. Yes, I think it is natural for people to do that, and it is a dangerous trap to fall into. I used to do the same thing with my allergies--I blamed all my health problems on them, mainly because the doctors didn't think anything else was wrong with me, until things got bad enough that I finally realized it had to be more than just allergies. While celiac can cause a lot of diverse symptoms, if you don't feel better after being on the diet for awhile, other things need to be investigated.

Dry eyes can be an allergy symptom. It can also be a side effect of antihistimines taken for allergies.

2. Body aches can also occur with out of control allergies in my experience. Now that the pollen is high, I'm experiencing them more again. It all has to do with inflammation in the body.

3. It is hard. I had a university allergist dismiss me as a whiner with "poor symptom tolerence" when I gave him my long list of symptoms.

4. I don't know how by myself. The way I finally did it was have my husband accompany me into exam rooms. Doctors are too intimidated to dismiss an man's wife when he is in the room with her.

You'll be suprised how many symptoms go away on the diet. In my case, I didn't fully realize how bad I felt until I didn't feel so bad anymore. Also, if you do have allergies, your sore throat may be caused by post nasal drip. And of course a rash, could be allergy related also. My allergies have definitely improved going gluten free, but haven't disappeared. I still take allergy meds.

feelingbetter Rookie
feelingbetter
Posted

My husband went gluten-free and still had a terrible rash , lower back ache and D. He then quit dairy and all problems resolved after 3 weeks. You may have other allergies.

I have been recently tested positive for gluten and dairy myself. I also know that corn, soy and sugar are absolute no no's me. I am still keeping a vigilant eye for other food sensitivities.

Archived

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

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


  • Member Statistics

    • Total Members
      127,509
    • Most Online (within 30 mins)
      7,748
    Mr-Collateral531
    Newest Member
    Mr-Collateral531
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.2k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Matt13
      Certified gluten free oats

      By Matt13 · Posted

      Thanks for the reply ! I am asking because tomorow i have egd and nobody told me not to eat gluten-free oats… and i was scared that it could ruin my biopsy results… 
    • trents
      Certified gluten free oats

      By trents · Posted

      Yes, I would think that for the 10% of celiacs who can't tolerate oats it would cause villous atrophy just like gluten. No, it would not produce marsh 3b villous atrophy in a couple of days. Nothing will produce measurable villous atrophy that fast. It takes at least two weeks of at least 10g of gluten consumption daily (10g is the amount found in about 4-6 slices of wheat bread) to develop measurable villous atrophy and even then probably not 3b villous atrophy. Are you asking these questions in because you are considering taking on a gluten challenge?
    • Matt13
      Certified gluten free oats

      By Matt13 · Posted

      Thanks for the awnsers i understand there is maybe system reaction but do they create or cause villious atrophy? And igmf you it them for example a couple of days di they instantly induce marsh 3b?
    • robingfellow
      Can gallbladder issues cause symptoms of celiac disease?

      By robingfellow · Posted

      My gallbladder was at 94% ejection fraction according to my HIDA scan before surgery, when the "normal" range is considered to be between 30-80%, so the surgeon recommended removal because I had been experiencing severe chronic upper quadrant pain and even vomiting despite having a strong stomach. A biopsy after surgery showed intense inflammation suggesting my gallbladder was on the verge of bursting if I hadn't gotten it removed.   The last time my iron and vitamin d levels were checked post-gluten free diet they were in a normal range (I take 60mg iron tablets every other day, and vitamin D capsules daily) I do also take magnesium daily, specifically 400mg magnesium bisglycinate at night to aid my sleep since I try to avoid taking melatonin due to personal preference.   I'll definitely have to keep in mind the point about celiac possibly causing gallbladder problems, I'll probably wait until I can see a proper GI and get their input before I attempt to reintroduce gluten back into my diet that way any reaction I may or may not have can be properly assessed.
    • Mr-Collateral531
      Can gallbladder issues cause symptoms of celiac disease?

      By Mr-Collateral531 · Posted

      I have dealt with gallbladder issues on-and-off for about ten years now. I was diagnosed with biliary dyskinesia in 2016 but chose to keep my gallbladder. Then in July 2022, I was diagnosed with celiac disease. Your surgeon is partially right in that your gallbladder can definitely cause some of those issues. However, the flip side to the coin is celiac can cause issues with your gallbladder. It’s a lesser studied area of disease manifestation, but limited research has shown a correlation between celiac, gallbladder dismotility, and how a gluten-free diet can help increase the gallbladder ejection fraction. Which literally happened in my case. In 2016 my HIDA scan measured my gallbladder ejection fraction as 29%. Then in 2023 after going strict gluten free, my HIDA scan measured it as 100%. It’s not perfect. I get right upper quadrant pain from time to time still. But at least I got that piece of evidence for myself.  I haven’t found any empirical studies on it but I have a theory. The gallbladder stores your bile for digestion. When the food enters your small intestine, the cells of your duodenum secrete cholecystokinin (CCK). CCK is what tells your gallbladder to empty. It’s literally Greek for “bile sac move.” Since the duodenum is a prime location for epithelial cell damage in celiac, it seems very possible that this can alter production of digestive hormones like CCK. As the small intestine begins to heal it produces more CCK and therefore the gallbladder can once again function. If you care to share, why did you need to have yours removed? In regards to the low iron and low vitamin D despite supplementation, that is also common in celiac. I fought vitamin D deficiency for almost a year despite taking 5000 IUs a day. I don’t have anemia, but I know I can use more iron based on my last round of blood work. Best I can say is you need to right cofactors as well. My vitamin D level virtually stayed the same for three different blood tests all 12 weeks apart. One was even after taking the prescription vitamin D of 50,000 IUs once a week. Once again, something not all doctors seem to know, but a nutrient deficiency isn’t necessarily treated by just taking more of that nutrient. Vitamin D metabolism requires many cofactors and processes in the small intestine, liver, and kidneys. And iron metabolism requires many cofactors as well including vitamin D. The biggest thing is to find a supplement regiment that works for you. Do you take specific vitamins or do you take a multivitamin? How much iron is in the supplement you take? What type of iron is it? Do you take magnesium? Another big game changer for me was adding 450mg/day of magnesium supplements for about two months and then dropping to 200mg/day. I would take 250mg of magnesium aspartate at lunch time and then 200mg of magnesium glycinate around 7:00pm. Magnesium is a huge cofactor for both vit D and iron metabolism. And that’s just one. Zinc, copper, vitamin K, boron, vitamin B6, folate, vitamin B12, and vitamin C are all contributing cofactors to vitamin D and iron metabolism. But too much supplementing is also dangerous. I’ve also been through iron overload and zinc toxicity in my post-celiac journey. Once again, doctors just saying to do one thing without considering anything else. I hope this helps and if you have any more questions don’t hesitate to ask.          
×
×
  • Create New...