LauraTX

Generally, people who have had bad damage from untreated Celiac do not absorb what they need from their food, and that can lead to low weight.  Once you start healing and properly absorbing things, if you had that going on, you definitely can gain weight.  If it continues or bothers you too much, just try to focus on overall healthy eating as you continue to heal.  A lot of the direct gluten-free substitutes are pretty unhealthy, so you can try limiting those if you are indulging in them now.

However, on the healing aspect... if you had such severe symptoms that would make one believe you probably had Celiac, and are now healing up and feeling better a bit, the only way you are going to feel 100% better is to be strictly gluten-free.  I understand that your life circumstances are not the most conducive to that right now, but I urge you to make it a priority when you feel it is able to be done.

You guys that bought their products need to let them know ASAP that you're getting sick.  

That is a good suggestion that many don't think about.  You can also send them a link to the new FDA standards.  You can also report them to the FDA if you feel they are blatantly ignoring what needs to be done, but the product needs to manufactured after this week. 

So I could whip up gluten free bread dough with a hand held mixer?

That may burn out the motor if you give it too much of a workload.

Kitchen Aid mixers aren't that tough for large families.  I got told not to put more than a few cups of flour in at a time! 

All of the kitchenaid mixers are rated for how many cups of flour they can deal with at a time for thick stuff like bread making.  I am not sure which one you were using that only allowed for a "few cups" but as you get the better models the capacity increases, the cheapest/less awesome "classic" model is rated for 8 cups, but overall since baked goods differ, it is all about the power of the motor + the size of the bowl.  Like anything where you get what you pay for, I recommend not going for the bottom line model, and choosing somewhere in the middle, or if you are using it a whole lot, one of the bigger ones.  The "artisan" is the classic one that is most common.  

All the attachments are good, I really like the ice cream maker, and the food grinder/strainer is nice for making things like applesauce.  If you make your own pasta, the pasta roller is great, too.  But overall, yes, it is all stuff you can do by hand.  For people like me with arthritis and such, it is invaluable.  I need to pick up the grater, I have trouble grating things, too.  But the more you use it, the more it pays off.

Sounds shady to me.  Companies like that are the ones that seem to break the rules more often... I would go with something that is a safer bet.  

......Beware of lentils!!! I made lentil soup last week and got sick. Turns out, lentils are harvested and processed on equipment also used to process wheat! I was astounded! The lentils were the only thing I could think of that could possibly be the culprit. Crazy, right? First place to check was here to this forum! So relieved to find I wasn't the only one!....

Please note that not all lentils are contaminated in processing, and when not adulterated, lentils are a gluten-free food.  As in anything, shared equipment can lead to contamination, whether it is frozen veggies, baked goods, anything really, and you can find plenty of sources that are safe.  Disclosure on the bag that they are processed on shared equipment is voluntary, so you can always call the company to ask if there is no statement.

Welcome to the forum!  It definitely sounds like your system needs a resting period, especially after the illness you had two weeks ago.  Karen is spot on with her recommendations, a re-evaluation of what is going down the hatch is in order.  Limiting eating out will especially help to limit exposure.  It may also be a good idea to go ahead with the scopes to see if there are any other issues that need addressed. 

I and many others on the board here understand the challenge of having normalcy taken away from you, whether it is from a disease or life circumstances.  I know that what many people share here is only the tip of what has actually gone on/is going on in their lives.  It really can be difficult to cope with that, but there is a point at which you just have to pick up the peices that are left of yourself and your life, and keep running with that in hand.

Have you been seeing the same therapist for a long time?  Some times even if it is a good therapist, you can hit a stale point and stop progressing so it is time to find someone else.  They may have helped one issue but another may help with other things.  I recommend seeing a psychologist if things like PTSD and traumas are involved since they can have a little more insight into the brain's involvement.  Also, once someone has been through trauma, chemical changes can permanently alter the brain, and although medication is not always the answer, it can really help some people.  I understand some have an aversion to it, but especially when you are so unable to function in life, it can be worth trying it out with the right doctor.

Lastly, before you start cutting out a bunch of foods with unproven cross reactivity, it may be a good idea to take an extensive look at how gluten-free your diet was for those 4 years.  The gluten-free diet really is all or nothing, so if you have picked out things that were resulting in gluten coming in, all you may need is just a completely gluten-free diet before resorting to other measures.  Now, it is possible for other foods to bother you and you have an intolerance to them, and an elimination diet/food journaling can help you figure out any triggers for problems.

Overall, it is important to establish a new normal and make your home and your life a safe place for yourself.  It starts with a safe diet, but it could be better to not be around people that are the reverse of supportive.  You can check out the gluten intolerance group (Open Original Shared Link) or do a google search for a group and see if they have a local chapter near you, to meet people in your area who have to eat the same.

Sweetie, you are not being excluded, you are being invited to these functions because people want you there.  There are a multitude of barriers to people being able to accommodate special needs, and you can read through some of the links I gave you earlier to see how sometimes the host can get around them, and sometimes it is just too much to safely do with the circumstances.  If you don't have time to teach it to a person, is just politely ask for free reign in their kitchen, and find something in there that is okay and make it for yourself.  You can also eat at home before, bring your own food, just have a drink and enjoy the company, etc.  

Overall, limitations are really all about your outlook and attitude.  I highly recommend you seek out a professional to talk to.  If your health plan is not providing that for you, many religious institutions and charities have free counseling available.  Just do a google search for "free counseling -city-".  Being a veteran can help with some eligibility as well.  Here are a few links you may find helpful, but mostly searching for things within your local area will be of more assistance.  If you are feeling very upset and hopeless, please call 1-800-273-8255 without hesitation.  You can also go to the nearest hospital emergency room to get immediate care.

Open Original Shared Link

Open Original Shared Link

I also hope you feel better soon.

Another thing I have done, since I have joint pain and muscle spasms with my lupus, is osteopathic manipulative therapy.  They don't do anything crazy with me, but they basically realign my stuff up since it seems to go out of place all wonky all the time.  I understand the whole not wanting to take pain meds thing.   Since I have a chronic pain condition but can still function, I don't take pain meds unless there is something acute going on.  I am all for trying alternative remedies first, especially when it isn't something that will heal up soon.  

I have thought about trying the essential oils thing myself.  I just haven't made the step to find someone to introduce it to me, I am very hesitant to go to the natural medicine type of people.  

Welcome to the forum, Sen! Looks like the ladies above have given you some great info as to what to get tested.  I definitely think you should get it looked into.  Even if it is a no, the peace of mind to rule something out is worth it.  Let us know what happens, and if you want to get a copy of your lab reports and post them here, we can help you figure things out if they aren't cut and dry.

Welcome to the forum.  If you feel that at this time, a second opinion evaluation of your dietary restrictions is not necessary (although I highly recommend that), there are still a few things that can make coping easier.  Having a permanent medical condition like this can be socially isolating, anxiety-inducing, and so forth.  Talking with a counselor or other professional can help with coping skills, and just help you get through the transition phase and the grief.  There are counselors who specialize in helping people with chronic diseases, but any should do, just pick someone you feel you can comfortably open up to.  

On the cooking and preparation end, cooking in batches ahead of time can be greatly helpful for when you are unable to or just can't cook that day.  I have other conditions that can make me ill on some days, so I make my own frozen dinners.  I will do individual portions of things, ones big enough for my husband and I to eat on for a day or two, freezer meals where you freeze meat +veggies in a bag and throw it in the crock pot, etc.  You can make your own granola bars to bring as snacks, and those and any baked good will keep in the freezer if you wrap it tightly.    For going to someone else's house, I will take a meal for me in a single microwaveable container, so all I have to mess with is popping it in the microwave and I can use paper towels as a barrier, etc.  If it isn't a place where I can heat up my meal, you can search the forum here for tons of ideas for bringing lunches or snacks with you to work and other places.  There are also many helpful discussions on traveling... many of us will bring some basic things so we can cook for ourselves while on the road.

When it comes to dating, almost all of the people on this forum who are married are married to gluten eaters.  For dating, host a romantic picnic where you bring the food, or a dinner/movie at your house.  There are ways around the food problem, and if the guy doesn't want to be supportive of your dietary restrictions then he isn't really the one for you anyways.  Once you get really involved with someone, they may want to start eating the same foods as you so they can be closer to you and not have to worry about what is lingering in their mouth.  A lot of people on here have totally gluten-free kitchens, and their spouses eat gluten-free at home because they want to keep a safe environment for the one they love.  (Myself and my husband do this)

Meal prep/planning threads:

https://www.celiac.com/forums/topic/88488-im-tired-of-cooking/

https://www.celiac.com/forums/topic/108705-meal-planning-for-the-newly-diagnosed-challenge/

Travel/Out of house links:

https://www.celiac.com/forums/topic/105230-1st-holiday-season-after-dx-how-did-you-feeldocope/page-2#entry896956

https://www.celiac.com/forums/topic/107882-whats-in-your-kitchen-kit

https://www.celiac.com/forums/topic/107787-sit-down-dinner-wedding-reception-help/

Helpful forum links on Dating:

https://www.celiac.com/forums/topic/106154-dating-thoughts-and-profile-help/

https://www.celiac.com/forums/topic/108573-dating-seems-impossible/

https://www.celiac.com/forums/topic/107982-dating-w-celiac/

https://www.celiac.com/forums/topic/107966-how-to-approach-dating/

That is good to know.  I don't want to accidentally poison my peanut allergy friends!

For chronic pain, the mind over matter thing can help, it is hard to do and of course doesn't work 100%, but there are actually counselors who specialize in helping people with chronic pain and illness, so you may want to check one of them out.

I HIGHLY recommend using this recipe:  Open Original Shared Link and I have only tried it with their baking mix product, so if you use anything else it may not turn out.  Very good... and gluteny biscuits that were soft used to be one of my favorite things pre diagnosis.  This is the soft, American southern style kind.

Mmmmmm I am so hungry now!  That is a good video, it is nice to have those when you have a totally new cooking concept.

The alcohol in soy sauce is usually from the fermentation process and not added.  However, I took a quick look at a product description online, and all I ever see is "wheat-free" and no mention of gluten.  It may be a good idea to contact the manufacturer to see why they are not calling it gluten-free.

The best way to know would be to call the manufacturer and ask them if it contains any gluten or milk ingredients.

With such a high ttg IgA like that, even with mild inflammation on the biopsy, that is Celiac disease.  You are also feeling better on the gluten-free diet and that is also a big sign.  I would go to a new GI doctor who specializes in Celiac disease and bring copies of all the lab work and pathology reports for them to review.  If you go to someone competent, it is likely you are going to walk out with a Celiac diagnosis.  

Also, how many biopsies were taken at your endoscopy?  The damage cause by Celiac can be spotty and easily missed if not enough samples are taken.

Welcome to the forum!

There are a few things to take into account when cooking gluten-free and non gluten-free things in the oven at the same time, but in general it can be safe.  If the gluten-filled item is something that is going to splatter or put off particles, it is best that it be on a lower rack and possibly covered with foil.  If the item has loose flour all over it and a convection oven is used (where a fan blows the heat around) it may not be a good idea to have it in there with a gluten-free item.  But two things that will stay in their pans and can fit on the same rack very well without touching should be okay.  Make sure to use dedicated gluten-free pans and potholders so you aren't introducing cross-contamination.  If you are able to put the gluten filled item on a lower rack, that can prevent splatter like with bubbly pizzas.  

It is also important to take into account some good practices when you have a shared kitchen with gluten items.  If someone is baking with flour from scratch, the poofy nature of it can settle on other things that are not right next to it, so if you would like more info on keeping a shared kitchen safe, check out our newbie 101 thread:  https://www.celiac.com/forums/topic/91878-newbie-info-101/

Here are a few other things on keeping shared kitchens safe:

https://www.celiac.com/forums/topic/105006-nesting/?hl=nesting

Open Original Shared Link

https://www.celiac.com/forums/topic/105139-shared-kitchen-review-and-renew/

Feel free to ask any other questions you may have!

Good to hear the IgG came back normal.  If you want to stop messing with it and just go gluten-free now, that is probably a good idea.  Just know that if you ever want an official diagnosis from a specialist in the future, you will have to go back on gluten.  Keep a food diary so you can go back and figure out any irregularities.

Hi Kelley,

On the upper right corner of your screen is your username, if you click on that you can access your profile, your settings, and clicking "My Content" is a good way to see if there are any replies to things you have posted. When I first navigate to the site every day, I go to my content to see what is new on things I have posted on.

To post a new topic, first go to the main page https://www.celiac.com/gluten-free/ and click on the category you feel it best fits in.  We can fix that for you, so don't worry too much on that.  Then click on the dark blue "start new topic" button on the upper right hand corner.  Of course, you did this here, but just including the instructions in case you need extra help.  

To change things like emails you receive, etc, click on your name in the upper right hand corner, and click on settings.  On the left there are categories of things you can change like email notifications, your info, etc.

Honestly, an endocrinologist is likely not going to be up to date with diagnostic criteria of Celiac disease as it is out of their specialty.  With a low IgA, if your other immunoglobulins are low, that would be a separate issue all together (an immunodeficiency, which I myself have and am on the IV replacement med).  If she didn't test for the ttg IgG, that was a mistake, as the ttg IgA is result is unreliable.  At this point it is pertinent to get yourself to a GI doctor who specializes in the proper diagnosis of Celiac disease so you stop getting the runaround.

If your total IgG level comes back low, DO NOT let that endocrinologist put you on the replacement med until you are properly evaluated by an immunologist.  I say this from experience and seeing many others who were incompletely diagnosed, because there are many more facets than just having low immunoglobulins.  Having low IgA alone is not that big of an issue, however you may still want to see an immunologist to be properly screened, even if it is just bringing them your lab results and them telling you that you are A-Okay.  If you need help finding an immunologist you can start here: Open Original Shared Link or with your insurance company.

As said, any antibody test while you were gluten-free is invalid.  Also, because you have low IgA, any IgA associated test will show potential false negatives for you.  It will be interesting to see what the IgG one comes back as, let us know!  

I kind of have the attitude that I will buy into it once it is through the testing and approval pipeline.  However, if there were a way to diagnose without exposure to gluten, it would be really great for many people.

I am weird in that I don't like strong mint taste, and I also can't stand the alcohol in most mouthwashes.  I use Closys mouth wash Open Original Shared Link .  It tastes like stale water by itself, and it comes with a mint oil dropper so you can add just a little mint or a lot.  Kills all the germs and such just like the other mouth washes... it is pricey, but you only need a small capful each time so a bottle last a really long time so the price evens out.  Way better than the nasty listerine for me.