New To All This And Really Wondering

[sherie]

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.

[itchygirl]

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.

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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]

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]

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]

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]

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]

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.

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

[sherie]

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.

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]

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...

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]

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]

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.