Advice on arthritis, certified gluten-free, and wine

[MaureenB]

Hey there - new to this site. Some questions that I'm hoping other people might have had experiences with. 

Arthritis - does anyone get joint pain/swelling with even the smallest glutening? If so, how long does it take for your joints to feel better? (Getting work up for rheumatoid arthritis at the moment but hard to tell if it's all just because of gluten)

Food - Is there anyone out there who can only eat certified gluten-free foods? I thought I was being so careful not to eat gluten but I'm still feeling so awful all of the time.

Do I truly have to only eat certified gluten free food if it comes in a package?

What about things like meats and dairy?

For example, I would have normally bought something like a pasta sauce (simple ingredients of tomatoes, onion, garlic, etc) that doesn't have gluten listed in the ingredients, doesn't say it was made in a facility with wheat, but also doesn't say gluten-free. So is this where I'm going wrong? Foods that seem as though they would be gluten free can't be trusted without explicitly saying so?

Wine - I know that when you Google, it says that alcohol should be gluten-free, but I have also read that many wines use gluten in various ways. Does anyone find that wine makes them sick?

Thank you for any help/advice,

Maureen 

 

 

[trents]

Welcome to the forum, MaureenB!

Arthritis - does anyone get joint pain/swelling with even the smallest glutening? If so, how long does it take for your joints to feel better? (Getting work up for rheumatoid arthritis at the moment but hard to tell if it's all just because of gluten) Yes, this is a very common medical condition associated with gluten related disorders.

Food - Is there anyone out there who can only eat certified gluten-free foods? I thought I was being so careful not to eat gluten but I'm still feeling so awful all of the time. I suspect that your are reacting to something else in your diet. Are you still consuming oats (even gluten free oats) or dairy? Many celiacs react to the proteins in these two foods in a similar way as they do to gluten. Also, you could have SIBO, a very common offshoot of celiac disease. Do you get discomfort mostly from high carb foods or from everything? You shouldn't have to eat only "certified gluten free foods." There are lots of mainstream foods that do not contain gluten but you do have to watch for CC (Cross Contamination). You may find that sandwich meet or other "formed" meat products that use "meat glue" (look it up) will give you a reaction because the "meat glue" is similar to gluten. Fresh meat should be fine.

For example, I would have normally bought something like a pasta sauce (simple ingredients of tomatoes, onion, garlic, etc) that doesn't have gluten listed in the ingredients, doesn't say it was made in a facility with wheat, but also doesn't say gluten-free. So is this where I'm going wrong? Foods that seem as though they would be gluten free can't be trusted without explicitly saying so? This is a gray area and may depend on whether or not you are a very sensitive celiac.

If wine makes you sick it is most likely due to sulfites or high histamine content. You need to do some research on Mast Cell Activation Syndrome and Histamine Intolerance. Very common problems in the celiac community. I cannot drink more than half a glass of wine or I get a migraine.

Sorry, I wish it were the case that we could just eliminate gluten and all our health issues would go away and we would feel like a healthy person immediately. Unfortunately, it's usually not that simple. For most of us, we have had celiac disease or NCGS (Non Celiac Gluten Sensitivity) for many years before getting diagnosed and by that time there have accrued other spinoff health problems. We have to address them one by one.

May we ask your age and how long you have been eating gluten free? Do you have Celiac Disease or NCGS?

 

 

[NNowak]

I’m sorry you’re not feeling great - yet. You are wise pursuing an evaluation with a rheumatologist. Celiac is connected to certain types of autoimmune arthritis, specifically spondyloarthropathies. I was Dx Celiac in 1995 and continued with the GI symptoms, joint pain and malaise. I saw 2 rheumatologists around 15 years ago who visually diagnosed me with nothing. A third rheumatologist in 2020 took a look at my history of joint pain, GI issues and ran further tests to confirm the diagnosis he immediately suspected. I didn’t have refractory spruce, MCAS, additional food allergies, or some unknown condition. I have spondyloarthritis. 
 

Histamines increase pain with any inflammatory condition (tomatoes, alcohol, bananas, avocados, leftovers). Dysfunctional GI will cause upset with most foods until the source of inflammation is addressed and balance is restored. Make sure your rheumatologist is aware of all your symptoms so you get a proper evaluation. It’s not always Celiac when symptoms persist. 

[RMJ]

In order to get my antibody levels down to a normal range I had to switch to only eating packaged foods that are certified gluten free, or come from a company with an excellent reputation amongst celiac patients.  Not everyone is this sensitive. Of course meat, milk, fresh fruits and vegetables are naturally gluten free so I can eat those.

[Scott Adams]

Many celiacs do eat naturally gluten-free products, for example tomato paste or sauces may not be labelled gluten-free, but are naturally. This section of our site has many articles on this:

https://www.celiac.com/celiac-disease/gluten-free-foods/

for example:

 Some celiacs only eat items with "gluten-free" or that are Certified Gluten-Free, but this could severely limit your choices, and there is no absolute guarantee that even Certified Gluten-Free products cannot at time have issues, but it is rare.

[Wheatwacked]

Ask him to check you for Adrenal Insufficiency. If you say adrenal fatigue he will laugh at you. Not enough cortisol (prednisolone is a metabolyte of cortisol) can allow arthriis to develope. cause the pain. Gluten causes inflammation.

My black lab was born with congenital hip dysplasia. As a preventive measure he was on prednisone 10 mg every other day. At 9 years old his x ray showed no sign of arthritis while my other two black labs (unrelated) had arthritis.  They all ate Lamb and Rice.

While your gut is healing don't eat any manufactured foods.  It's like scratching at a scab, keeps irritaing and introduces possible infection and slows the healing.

A link to the Fasano list of foods to eat: Products allowed/disallowed in the Gluten Contamination Elimination Diet (GCED), targeting the elimination of gluten cross-contamination

Fix all know vitamin and mineral deficiencies as quick as you can. In Celiac there are up to 20 affected by the villi damage in the small intestine and even in Non Celiac Gluten Sensitivity you have vitamins and and minerals in fortified wheat that you no longer get and others by simple avoidance of foods. 

[GF-Cate]

On 10/4/2022 at 8:26 PM, MaureenB said:

Food - Is there anyone out there who can only eat certified gluten-free foods? I thought I was being so careful not to eat gluten but I'm still feeling so awful all of the time.

Do I truly have to only eat certified gluten free food if it comes in a package?

Arthritis & Joint Pain

Yes, I had loads of joint pain. Went completely grain free at times, which has been helpful to me. 

The book No Grain, No Pain is very informative about this topic. 

Eating only CGF

I am super-sensitive to small amounts of CC (cross-contamination) and do strive for mostly CGF items. There are some tried and trusted brands that fall out of this category, but for the most part, CGF is what I go for in packaged items. 

My thought on this is that while you are healing, replenishing nutrient levels and getting a handle on what other foods may be causing issues (if any), it is best to really scale back and take a simplistic approach to eating. AIP style of eating may be helpful with inflammation/joint pain as well. Whole, nutrient-dense, unprocessed foods that you cook youself, from the perimeters of the grocery store. 

Perhaps go for only CGF packaged items for now, knowing that when you have symptoms well under control and your follow-up celiac blood testing & endoscopy look good, then you can test items one at a time keeping a food diary and add back if ok.

There has been a huge increase in CGF products, so manufacturers are clearly seeing the demand from consumers (and profits). Even if you don't have local availability for CGF products, it is easy to order most anything from Walmart, Target, Amazon, etc. 

Meat & Dairy

This is a category where you really have to examine the production and potential for CC, where you buy (I would put fish in this category too).

If you're buying raw, non-marinated, non-spiced, non-breaded pieces of meat, poultry or fish in the refrigerated or frozen section of your grocery store, it's probably fine (still always read labels, esp with pre-packaged frozen to ensure no CC in factory). However, if you're buying at a butcher shop or fish shop (or the meat or fish case at your local grocery) where marinated, breaded, spiced items are in the case next to plain raw meat or fish, the likelihood of CC is real. At the very least you should be sure the worker changes gloves, doesn't wrap in contaminated area and takes CC precautions (and then rinse it when you get home).

Dairy - lots posted in this forum about dairy & avoiding while healing (or potentially longer term), so I won't revisit, but worth doing a search on for more info. But I do have some thoughts about cheese. 

Increasingly I see cheeses that have gluten ingredients (beer-flavored cheeses for example), so always best to use caution. 

At the in-store cheese shop at my local grocery they cut and package wheels of cheese without cleaning in between, so there is real potential for CC from cheeses that have gluten ingredients (I am DF but buy for my family). I think it is safer to stick to factory sealed vs. store cut & wrapped varieties. 

Cheeses such as bags of shredded cheese & cans of parmesan cheese (and others) may contain gluten. This is a good primer about cheese and gluten. 

Pasta Sauce

For this type of item I definitely stick with brands labeled gluten-free, because there is real potential for the other ingredients to contain gluten (especially spices). Luckily, there are plenty of brands to choose from (of course with anything, not all flavors/varieties of a particular brand are necessarily gluten-free even if one is, so read all labels.)

This is also the type of product I am brand loyal to in an attempt to reduce shopping and label-reading fatigue. I buy one brand I like and stick with it (I do double check the label everytime I shop still, as formulations can change, but it still simplifies things).

Wine

I drink very little, because alcohol tends to no longer agrees with my GI tract, and have been completely alchol-free at various points in my recovery (and definitely for weeks/months following any CC). I do best with non-wood barreled white wines.

Reds are tougher and I have yet to fully understand what the cause is for me (but would like to b/c I prefer red!). It may be some of the factors that Scott mentioned. I do better with organic reds, but sometimes even those get me. 

And even though wines don't have to be labeled as gluten-free, it gives me more confidence when the manufacturer seems to be aware of manufacturing and potential CC issues, so I always look for brands that have that awareness. This list of brands may be helpful. 

[Scott Adams]

2 hours ago, GF-Cate said:

Pasta Sauce

For this type of item I definitely stick with brands labeled gluten-free, because there is real potential for the other ingredients to contain gluten (especially spices). Luckily, there are plenty of brands to choose from (of course with anything, not all flavors/varieties of a particular brand are necessarily gluten-free even if one is, so read all labels.)

This is also the type of product I am brand loyal to in an attempt to reduce shopping and label-reading fatigue. I buy one brand I like and stick with it (I do double check the label everytime I shop still, as formulations can change, but it still simplifies things).

While I agree with the idea of picking a brand that is labelled gluten-free over one that is not, I don't believe that "there is real potential for the other ingredients to contain gluten (especially spices)" in the major brands of pasta sauces. Again, all are required by law to list the 8 major allergens on their labels, including wheat. If wheat were detected in any of them it would trigger a major recall, so it is very doubtful that there would be hidden wheat in them.