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

New To All This And Really Wondering

sherie

Recommended Posts

sherie Rookie
sherie
Posted

I went to the doctor and saw his NP a couple weeks ago. I had been having severe acid reflux and not having much luck with over the counter meds so I decided to go get a prescription. I also mentioned that I had been very very tired (with accompanying poor concentration and brain fog) lately so she ordered some blood tests. Turns out that my iron and b12 were very low. She has celiac disease and thought that my low levels might be an absorption problem like celiac disease. She ran the blood panel but it came back normal. I have a biopsy scheduled for mid April. Meanwhile I have been doing my own research and found this forum. I had been going to a rheumatologist for what she has labeled "inflammatory arthritis" I was being treated as if I have RA so I usually just say I have RA. I never felt that the plaquinel I was taking was really working so I went off it. I am now wondering if it is RA or if it is celiac disease. I have also been getting bad sinus headaches since last summer that not only hurt but make me really tired and haven't gone away despite taking antibiotics. Has anyone ever heard of having such headaches associated with celiac disease? I've had some upset stomach issues that I usually chalked up to eating something I shouldn't have. Not too bad though. I do have a very sensitive stomach and can no longer take any NSAID. Many years ago I suddenly developed a severe sensitivity to broccoli, avocados, and sometimes raw peanuts which got worse with my last 2 pregnancies to the point that I wasn't sure what was going to give me severe stomach pain but without gas or diarrhea. I also have a 24 yr old son who has had gastro problems for most of his life but nobody could ever figure out what the problem was other than poor eating habits(he hates veggies). He has attention deficit without the hyperactivity. He is very much underweight and has anxiety issues. If I test positive he definitely needs to get tested and probably should no matter what happens with me.

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

Celiac.com Sponsor (A8-M):


itchygirl Newbie
itchygirl
Posted

There are many.many neurological complications associated with celiac disease. The symptoms can be so bad in some individuals that celiac has been mistaken for mad cow diesease, for example.

Open Original Shared Link

You can have both RA and celiac. I have Sjogren's and celiac. Hopefully, if that is the case, a gluten free diet will reduce your symptoms. :)

rinne Apprentice
rinne
Posted

Hi Sherie,

Welcome. :)

Keeping a food journal that includes how you are feeling physically will help you to track the foods that may be a problem. A simple diet may be best, no processed food or sugar. Also, once your B levels go up you will likely feel better, I know I did.

Hang in there, it sounds like you may be close to find some answers that will help you.

For arthritis or any kind of inflammatory condition it may be best to avoid all nightshades - potatoes, tomatoes, eggplant, peppers and tobacco, some people find it makes a big difference in their pain levels.

sherie Rookie
sherie
Posted
  • Author

For arthritis or any kind of inflammatory condition it may be best to avoid all nightshades - potatoes, tomatoes, eggplant, peppers and tobacco, some people find it makes a big difference in their pain levels.

sherie Rookie
sherie
Posted
  • Author

I have another question. I'm wondering if after being gluten-free your body becomes even more sensitive to gluten. So if you accidentally eat something with gluten, is your reaction worse than before you went on a gluten-free diet? Also how serious is cross contamination issues for most people? Thanks!

MDRB Explorer
MDRB
Posted
I have another question. I'm wondering if after being gluten-free your body becomes even more sensitive to gluten. So if you accidentally eat something with gluten, is your reaction worse than before you went on a gluten-free diet? Also how serious is cross contamination issues for most people? Thanks!

I went gluten free for about six months before going to the doctor. I then had to eat at least one meal a day containing gluten for a month before the endoscopy. The gluten made me really really sick, much sicker than I had ever been before I went gluten free. I was a total zombie and I barely got out of bed. It also took me at least another month to start feeling better again.

So in my experience, you do become more sensitive. But I think this is a good thing, as it alerts you when you have ingested some unsuspected gluten. I would much rather have symptoms rather than unknowingly continuing to eat hidden gluten.

Panopticism Rookie
Panopticism
Posted

As far as the sinus headaches... I used to get four to ten sinus infections per year. And before that it was ear infections when I was much younger. Haven't even had a cold since going gluten-free/casein-free. :o

Come to think of it, I haven't had a virus or infection at all...

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

Celiac.com Sponsor (A8-M):


sherie Rookie
sherie
Posted
  • Author
As far as the sinus headaches... I used to get four to ten sinus infections per year. And before that it was ear infections when I was much younger. Haven't even had a cold since going gluten-free/casein-free. :o

Come to think of it, I haven't had a virus or infection at all...

Thing is I don't feel like I have a sinus infection(aside from the headache being in and around my eyes) and in fact I rarely get sick. I might get a cold but it is usually gone in 4 days or so without becoming full blown. As far as getting the flu or flu like illness, I haven't had that in at least 10 years! I have assumed that my over active immune system at least kept me from getting sick. I also dont have any allergies that I know of. So the headaches are strange to me. What is casein?

Ridgewalker Contributor
Ridgewalker
Posted
I have also been getting bad sinus headaches since last summer that not only hurt but make me really tired and haven't gone away despite taking antibiotics. Has anyone ever heard of having such headaches associated with celiac disease?

Thing is I don't feel like I have a sinus infection(aside from the headache being in and around my eyes) and in fact I rarely get sick. What is casein?

Hi Sherie, and welcome to the forum! Casein is a protein found in dairy. Casein's structure is rather similar to the structure of gluten (the protein found in wheat, barley, and rye), and many Celiacs also cannot tolerate casein. Casein is not the same as lactose, which is milk sugar.

Can I ask, why is your doctor giving you antibiotics if you don't have a sinus infection? If I can ask a gross question, when you blow your nose, what color is it? If it's clear or white, you probably don't have an infection, and I just wonder why they'd give you unnecessary antibiotics... :unsure:

Having said that, I am a sinus infection queen (one of several in these forums!) I have one right now that refuses to respond to antibiotics. I have a very difficult time with them, and so do my kids. My older son, though, has not had a single one all winter. This is significant because he's been gluten-free longer than me or my other son. I believe untreated Celiac can really compromise your immune system. So in that way, I would say Yes it can definitely be related.

I have another question. I'm wondering if after being gluten-free your body becomes even more sensitive to gluten. So if you accidentally eat something with gluten, is your reaction worse than before you went on a gluten-free diet? Also how serious is cross contamination issues for most people? Thanks!

Yes, many people go through an increased sensitivity to gluten once they go gluten-free. Before I went gluten-free, my stomach symptoms were diarrhea 4-5 times a day. Now that I've been gluten-free for 7 months, gluten not only gives me diarrhea, but also crushing heartburn and projectile vomitting!

Cross Contamination (cc) is a very serious issue. Even if you don't get noticeable symptoms from cc, damage to the intestine still occurs.

I recently had to scrub down my entire kitchen because my kids were getting cc'ed from something in our own house. A couple days after the scrub-down, they're low-level reactions began to fade away. It's not easy, but it's very important to be 100% careful and strict with the diet.

By the way, you know to stay on gluten until your biopsy, right? Ask as many questions as you can think of, this is an excellent place to get good information!!!

sherie Rookie
sherie
Posted
  • Author

Thanks.

I started having sinus headaches last summer almost everyday. I didn't think I had an infection but when the headaches continued I went to the doctor in October thinking that I probably did have an infection. I was having a little drainage in the back of my throat so it was hard to tell what color it was. My nose wasn't and isn't runny but if I do blow my nose it is either clear or white cloudy not yellow or green. The antibiotic seemed to work for the first week and then the headaches came back but now I only get them about twice a week. Still not sure if it is my sinuses or not.

I thought so but I have a friend who is not only a nurse but has a sister with celiac disease. She implied that worrying about using the same toaster or worrying about eating at a resturant is taking the gluten-free diet too far. I am getting the impression from what I've read that it really doesn't matter that much if you ingest a little or a lot of gluten into your system. Is that about right? If I am going to go to all the trouble of staying away from gluten then I am not going to take a chance at eating out or using the same toaster!

Thanks for all the info and yes I know to stay on gluten until after the biopsy.

Ridgewalker Contributor
Ridgewalker
Posted
I thought so but I have a friend who is not only a nurse but has a sister with celiac disease. She implied that worrying about using the same toaster or worrying about eating at a resturant is taking the gluten-free diet too far. I am getting the impression from what I've read that it really doesn't matter that much if you ingest a little or a lot of gluten into your system. Is that about right? If I am going to go to all the trouble of staying away from gluten then I am not going to take a chance at eating out or using the same toaster!

Yes, that's right. Even a very small amount can cause symptoms and will cause damage. Using the same toaster for gluten-free bread and regular bread is totally pointless. You are exactly right. Why bother going gluten-free, doing all the work, and making all that effort... just to turn around and put your gluten-free bread in a gluten crumb holder?

Eating out is possible, it's just tricky, and it's always a risk. We eat out MUCH less than we ever used to.

Archived

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

Go to topic listing

  • 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. Ginger38
      - Ginger38 replied to Ginger38's topic in Related Issues & Disorders
      4

      Shingles - Could It Be Related to Gluten/ Celiac

      It has been the most terrible illness ever! Going on 3 weeks now… I had chicken pox as a kid… crazy how much havoc this dormant virus has caused after being reactivated! No idea what even caused it to fire back up. I’m scared this pain and sensitivity is just never going to improve or go away
    2. Mari
      - Mari replied to Jmartes71's topic in Related Issues & Disorders
      18

      My only proof

      OKJmartes. Skin and eyes. Also anxiety and frustration. I have read that Celiacs have more skin problems than people who do not have Celiacs. I take increased levels of Vit. D3, very high levels of B12 and an eating part of an avocado every day. KnittyKitty and others here can add what they take for skin health. A Dermatologist might identify the type of...
    3. Ginger38
      - Ginger38 replied to Xravith's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Challenges eating gluten before biopsy

      I refused to do the gluten challenge for a long time because I knew how sick I would be: I have always had and still have positive antibodies and have so many symptoms my GI was 💯 sure I would have a positive biopsy. I didn’t want to make myself sick to get a negative biopsy and be more confused by all this. He couldn’t guarantee me a negative biopsy meant ...
    4. Scott Adams
      - Scott Adams replied to Xravith's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Challenges eating gluten before biopsy

      It's completely understandable to struggle with the gluten challenge, especially when it impacts your health and studies so significantly. Your experience of feeling dramatically better without gluten is a powerful clue, whether it points to celiac disease or non-celiac gluten sensitivity. It's very wise of you and your doctor to pause the challenge until...
    5. Scott Adams
      - Scott Adams replied to emzie's topic in Related Issues & Disorders
      2

      Stomach hurts with movement

      It's smart that you're seeing the gastroenterologist tomorrow. While it's possible this is a severe and persistent inflammatory reaction to gluten, the fact that the pain is movement-dependent and localized with tenderness is important for your specialist to hear. It could indeed be significant inflammation, but it's also worth ruling out other overlapping...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,470
    • Most Online (within 30 mins)
      7,748
    Elkay008
    Newest Member
    Elkay008
    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

    • Ginger38
      Shingles - Could It Be Related to Gluten/ Celiac

      By Ginger38 · Posted

      It has been the most terrible illness ever! Going on 3 weeks now… I had chicken pox as a kid… crazy how much havoc this dormant virus has caused after being reactivated! No idea what even caused it to fire back up. I’m scared this pain and sensitivity is just never going to improve or go away 
    • Mari
      My only proof

      By Mari · Posted

      OKJmartes. Skin and eyes. Also anxiety and frustration. I have read that Celiacs have more skin problems than people who do not have Celiacs. I take increased levels of Vit. D3, very high levels of B12 and an eating part of an avocado every day. KnittyKitty and others here can add what they take for skin health. A Dermatologist might identify the type of skin condition. By eyes you may mean eyesight problems not just irritated, red eyes. It is not very difficult to get a diagnosis of which eye condition is affecting your vision but much more difficult to find an effective remedy. The ophthalmologists I have seen have been only a little helpful. There seems to have been some advances in eye treatments that most of them are completely ignorant of or just won't add to their treatment plans.  Forcertain you may as well buy some remedy from a facebook ad but that is obviously risky and may actually damafe your eyes. However it is known that certain supplements , taken at the effectivelevels do help with eyesight. Two of them are Luten and zanthamin (spelling?)and certain anti-oxidants such as bilberry..    Hope this helps.
    • Ginger38
      Challenges eating gluten before biopsy

      By Ginger38 · Posted

      I refused to do the gluten challenge for a long time because I knew how sick I would be: I have always had and still have positive antibodies and have so many symptoms my  GI was 💯 sure I would have a positive biopsy. I didn’t want to make myself sick to get a negative biopsy and be more confused by all this.  He couldn’t guarantee me a negative biopsy meant no celiac bc there may not be damage yet or it’s possible to miss biopsies where there’s damage but he was so sure and convinced me I needed that biopsy I went back on gluten. It was a terrible experience! I took pictures of the bloating and swelling and weight gain during the challenge. I gained 9 pounds, looked pregnant, was in pain , couldn’t work or function without long naps and the brain fog was debilitating. And in the end he didn’t get a positive biopsy… so I wish I had never wasted my time or health going through it. I haven’t been truly straightened  out since and I am currently battling a shingles infection at 43 and I can’t help but wonder if the stress I put my body under to try and get an official diagnosis has caused all this. Best of luck to you - whatever you decide. It’s not a fun thing to go through and I still don’t have the answers I was looking for 
    • Scott Adams
      Challenges eating gluten before biopsy

      By Scott Adams · Posted

      It's completely understandable to struggle with the gluten challenge, especially when it impacts your health and studies so significantly. Your experience of feeling dramatically better without gluten is a powerful clue, whether it points to celiac disease or non-celiac gluten sensitivity. It's very wise of you and your doctor to pause the challenge until your holidays, prioritizing your immediate well-being and exams. To answer your questions, yes, it is possible for blood tests to be negative initially and become positive later as the disease progresses, which is why the biopsy remains the gold standard. Many, many people find the gluten challenge incredibly difficult due to the return of debilitating symptoms, so you are certainly not alone in that struggle. Wishing you the best for your exams and for obtaining clearer answers when you're able to proceed.
    • Scott Adams
      Stomach hurts with movement

      By Scott Adams · Posted

      It's smart that you're seeing the gastroenterologist tomorrow. While it's possible this is a severe and persistent inflammatory reaction to gluten, the fact that the pain is movement-dependent and localized with tenderness is important for your specialist to hear. It could indeed be significant inflammation, but it's also worth ruling out other overlapping issues that can affect those with celiac disease. Is it possible you got some gluten in your diet somehow? This could be a possible trigger. Hopefully, tomorrow's appointment will provide clearer answers and a path to relief so you can get back to your lectures and enjoy your weekend. Wishing you all the best for the consultation.
×
×
  • 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.