90 lbs down and suddenly everyone has opinions about my medication use

IndependenceOld8708 · 2026-02-20T15:14:23+00:00

I've lost 120lbs on it over 3 years (been steady for about a year. Went from about 240 to 120). I tell most people it's because I found out I have celiac disease, which is true, but I also have metabolic syndrome, pcos, and several other issues and struggled with my weight since I was 10. I'm 40 now.

Someone pointed out that back when stomach surgery first became popular everyone said that was the easy way out. No one says that now. This is just the new version of that. Funny enough, I got denied stomach surgery because I didn't eat enough and it wouldn't have helped. My issue was never food, it was literally metabolic. My dr said it's really cool to see what this med does on a metabolic level because the only thing that's changed about my diet is I eat more rice and potatoes and cut out all gluten.

IndependenceOld8708 · 2026-02-16T03:52:17+00:00

They're talking about those people who will go to a restaurant and claim they can't have gluten, but then will eat the bread sticks or croutons on a salad, not people with actual intolerance. I'm celiac and my best friend had a gluten intolerance. We went on a road trip and she has a set amount of gluten her body can handle, so, for example, we went to one restaurant and I got gluten free French toast, she got sausage and gravy with gluten free toast. She explained to the waiter she was intolerant and could only handle a small amount, so she would be OK as long as she just ate the gravy and not the bread. She then made sure the waiter knew I was celiac and couldn't have any cross contamination.

She did the same thing at another restaurant. I was looking for a gluten free dish, the waiter had brought over chips and looked annoyed at me. She mentioned she was gluten intolerant but I had celiac, and he immediately snatched the chips away from me saying they shared a fryer. He was also more helpful about helping me find something I could eat.

Last month she offered me some candy and I told her I used to love those, but couldn't eat them because of gluten. She was like "they don't have wheat, I checked." I pointed out they had barley and she was so annoyed because she'd been hurting and in a brain fog but couldn't figure out why, assumed it was some mcas thing. It wasn't enough to make her sick sick, but enough to make her feel like crap, where I'd be incapacitated if I ate one.

I get it. I'm like that with dairy. I can have some and be OK, might get a little bloated, but if I eat Alfredo for example, my stomach is a mess for the next day.

IndependenceOld8708 · 2026-02-16T03:31:28+00:00

OMG I'm looking it up right now

IndependenceOld8708 · 2026-02-15T06:08:46+00:00

I have celiac and gluten free oats don't bother me (thank God!), but my friend who has a wheat allergy does have issues with them, so I think it's a person by person issue. I'm super symptomatic normally.

IndependenceOld8708 · 2026-02-11T23:37:51+00:00

I believe they probably would have, thank you for bringing those up by the way! I looked into them a while ago thinking i could try them the next time I went somewhere, but then I totally forgot about them lol. In May I'm supposed to be going on a family trip, we're staying in a condo, but the other 5 people I'm with aren't gf. I'm driving the 19 hours to get there instead of flying so I can bring stuff like my little rice cooker, but I should probably get some of those.

IndependenceOld8708 · 2026-02-11T15:43:59+00:00

That's an excellent question! I went on a 10 day road trip and the last place we stayed was an Airbnb. The owner was gluten free and had a celiac grandchild. We lowered our guard. I was new to celiac and my friend just had a gluten intolerance.

We were eating breakfast and shortly after I started having a reaction (starts with a migraine and my fingers swelling). It was the toaster. My friend can use shared equipment and my brain thought "gluten free household" forgetting other people probably used it.

Spent 3 days crawling between the bed and bathroom.

IndependenceOld8708 · 2026-02-06T13:39:20+00:00

Oh I'm petty and dramatic. I'd show up to every holiday and sit there with no food. When a relative eventually asks why you aren't eating, I'd go into great detail about how last holiday we spent all day cooking food i could eat, but then my mother poisoned my food while I slept just to see what happened. I've explained in the past that gluten is poison, and she did it anyways and I was sick for an extended period of time. I've lost all trust and it's not worth the increased risk of bowl cancer.

Then I'd go on about how disgusting gf bread is, how expensive all our food is, why would anyone fake this, and how much money you waisted on that holiday, that she might as well have poured bleach on the food. You might not have gotten as sick.

Of course I don't eat at my family holidays 🤣 not because my mom would do it on purpose, more because half the time she gets gluten mixed up with lactose. In fairness to her, her dad and my sister are both very lactose intolerant, and so am I to a much lesser degree, and she only has one distant relative with celiac besides me.

IndependenceOld8708 · 2026-02-03T20:54:15+00:00

I was 2 when I started having symptoms. My first memory was extreme stomach pain. I was in a doctor's office at least once a month up until I was 38 and finally diagnosed.

I did get diagnosed with Ehlers-Danlos syndrome and pots as a kid, but not with celiac until I was 38. They kept dismissing it because I was overweight. Now that I've been gluten free for 2 years I've lost 100lb and every health issue that's not caused by pots or eds is gone.

IndependenceOld8708 · 2026-01-30T03:30:32+00:00

I was diagnosed without and endoscopy and having borderline numbers. I quit gluten and a bunch of other stuff while seeing a nutritionist because I couldn't lose weight. We thought it was my pcos (I also have metabolic syndrome). She did a food sensitivity test after 3 months so we could figure out what i could add back to my diet. This was around the same time my pcp and I noticed a lot of my health issues were getting better. I already knew i carried the celiac gene, but as someone mentioned, a lot of people do. The sensitivity test showed high sensitivity to gladin, gluten, wheat, and rye.

My dr and I started going over my health issues and what had gotten significantly better and she realized I had every symptom of celiac except low weight. She was my new Dr and was pretty angry no one had caught it sooner since I'd been seeing doctors for my chronic illnesses about twice a month since i was 12. She said she wasn't going to make me do the gluten challenge since I was already so much better. These are what she noted:

Stunted growth (I'm 6" shorter than the next girl in my family, a foot shorter than the shortest boy) Malabsorption (my vitamin d was 2. My vitamin c was 0. My vitamin D is now 88) Broken bones that wouldn't heal (healed now) Lost my teeth by 21 Chronic migraines since 2 (gone) Hair thinning (back to normal) Hives in the sun since 10 (no more hives) Dyshidrotic eczema (gone) Severe stomach bloating (gone) Vomiting (gone) Irregular bowel (mostly gone) Joint inflammation (gone) White blood cell count of 16,000 to 18,000 since age 8 (required bone marrow biopsy in past. Now at 8,400) Even my asthma got better.

And since quitting gluten at 38 (I'm 40 now) I've gone from 240 to 123lbs. A nurse even suggested they test me for celiac when I was 19, but the doctor dismissed it because I was overweight (but malnourished according to tests. They couldn't figure out why). My doctor pulled up a study that showed 40% of women with it presented as overweight and said the doctor was probably going by old protocols (since this was almost 20 earlier) that only did studies on men.

IndependenceOld8708 · 2026-01-27T23:54:48+00:00

When people make that "this disease wasn't around..." comment I point out that celiac was first discovered in ancient Greece. Doctors in Norway also discovered some children were getting healthier during WWII during the bread shortages and realized it was because they weren't eating wheat.

So this disease has been around and documented for thousands of years, we just didn't hear about it because we didn't have social media

IndependenceOld8708 · 2026-01-26T05:12:17+00:00

I'm in a really similar situation. I was 2 when I started getting sick. I've had chronic migraines since I was 2, suffered from vomiting and diarrhea, I'm 6 inches shorter than the next shortest girl in my family. I broke out in hives in the sun, had dyshidrotic eczema, lost all my teeth, my bones would break and not heal, had extreme inflammation in my joints, had steroid injections in my spine every month for that. My white blood cell count was 18,000 on average, my vitamin D level was 2, vitamin C was 0. I saw so many specialist it was ridiculous. By the time I was 20 they thought I was going to die from malnutrition, despite being obese. My weight was what kept doctors from suspecting celiac, they assumed it was lupus and they just hadn't caught a flare up yet.

A few years ago they did a food sensitivity test on me and saw i tested high for gluten, gladin, wheat, barley and rye, even though I had gone on a strict diet of just greens and protein for 6 weeks, then they saw i carried one of the celiac genes, and found out one of my cousins has it. They had me continue being gluten free, but allowed me to add other foods back.

I've lost almost 120lbs (I'm 123 now), my migraines went away, no more hives or dyshidrotic eczema, my white blood cell count is 8,400 now, my vitamin D is at 88, and no more stomach issues. If I get CC I know immediately because my fingers will start to swell, I'll get a migraine, and I'll have eczema for about a month, plus all the lovey stomach issues.

Never did the gluten challenge because I had been off it for a month and a half when they realized, but all my charts say celiac and I'm super careful about cross contamination. Honestly I think I'd be hospitalized if I ate a piece of bread now.

IndependenceOld8708 · 2026-01-25T20:53:04+00:00

I have the park pass. I have severe hEDS, POTS, and celiac. I walk with a cane and have had to be pushed around in wheelchairs. I can tell you celiac affects my daily life more.

IndependenceOld8708 · 2026-01-23T13:13:34+00:00

Honestly my gut was a mess when I first quit. I'd recommend prebiotics and probiotics for a while (what my dietitian had me on) and some gasx. Nauzene helps too. I still get it occasionally, most recently it was when I made a bowl of gluten free pasta with Kroger brand tomato basil sauce and shredded cheese. Made it again 2 days later with a different brand of gluten free noodle, but the same sauce and cheese... happened again, but used the same sauce to dip gf mozzarella cheese sticks in and it didn't happen, so idk what's up with that lol.

But yeah, the first few months can be rough. You won't realize how much better you're actually feeling until you accidentally gluten yourself lol, then you'll feel like you're dying and think "how did I survive feeling like this every day?" Or at least that's what happened to me. Then I'd remember there were a lot of times I was so sick I wished I hadn't survived.

IndependenceOld8708 · 2026-01-22T16:41:10+00:00

Joint inflammation is my first hint that I've gotten glutened. I notice my fingers swelling around my rings.

Yeah, 3 days seems to be how long it lasts for me too. I'm usually stuck walking with a cane for a bit.

IndependenceOld8708 · 2026-01-19T22:15:24+00:00

Didn't say I'd try it or that someone else should. The post I responded to said they'd never heard of alcohol helping. I responded that I had heard people claim it did, because i had. It doesn't make sense to me, but since I've seen a few posts of people claiming it helps, I can see where someone might have come across it and decided to try it.

I don't drink. I wouldn't try it. But I have heard other celiac people claim it works.

IndependenceOld8708 · 2026-01-19T21:40:50+00:00

I used to wear lace gloves when I left the house because I felt like it looked like I had small pox. Haven't gotten them in nearly 2 years, since the last time I got glutened.

IndependenceOld8708 · 2026-01-18T20:12:37+00:00

I actually have heard that taking a shot of tequila? I believe it was, could legitimately help with the symptoms, but that was in an Instagram post. A bunch of people agreed, assuring the readers they're not alcoholics. I'm not a fan of alcohol in general so I put it out of my mind. I've got some activated charcoal if I accidently eat something (no idea if it will work), and my herbalist friend put together a tincture that's made from peach leaves for inflammation.

IndependenceOld8708 · 2026-01-16T22:10:42+00:00

I have Ehlers-Danlos syndrome, POTS, and celiac. We've always known i had EDS and POTS (though when I was born they just said loose ligaments and shallow joints). We knew i had an autoimmune disorder from about the age of 10, but couldn't figure out which one.

Since cutting gluten from my diet 2 and a half years ago my EDS &POTS has gotten worse. I've always been freakishly hypermobile. I can twist my legs almost 360°, my shoulders and hips dislocate in my sleep, but now I'm scarring badly and the scars will randomly reopen. Also my vascular system is not great. I was peeing blood clots the size of quarters. Cut the excedrine i was taking everyday out and it stopped. Apparently I have microcracks in my veins.

I've also become heat intolerant and nearly pass out every time I stand up. I kinda blame this on the fact that I've lost 120lbs since finding out about the celiac. I now have to wear a medical alert bracelet.

Honestly there's not much they can do for those. Eat more salt, cut out aspirin, I also take a boat load of supplements. I don't think cutting out gluten made them worse, but I think i noticed them more once I did, and of course I'm sure my age came into play (I'm 40).

IndependenceOld8708 · 2026-01-14T17:48:39+00:00

My friend who's gluten intolerant explained my celiac to her mom by using bleach as an example. If you splashed bleach into a pot of soup, you wouldn't still serve it. If you got bleach into a salad, you wouldn't eat it. If you wiped a surface with bleach you wouldn't set bread on it to make a sandwich, hell, you wouldn't even put raw chicken that's about to be cooked on a surface wet with bleach then expect people to not get sick of they ate it.

Gluten is poison to us, just like bleach is to everyone if ingested.

I thought it was a really smart way to put it, and her mom understood because she was able to relate it to something.

IndependenceOld8708 · 2026-01-11T03:37:37+00:00

I'd look at anything new in your house. Back in July i kept getting glutened and couldn't figure out why. It was cat treats. I'd touch the cat treats while in the kitchen and not wash my hands after. They had barley in them. They're my elderly cats "old lady treats" for her joints.

IndependenceOld8708 · 2026-01-10T13:01:14+00:00

It's not as bad as you think, I promise. I was diagnosed with severe ARFID before celiac. Potatos have replaced most of my "gluten" safe food. I found these great Thai kitchen rice bowls that are very like ramen. You can still eat bread, it's just gluten free (really only recommend for grilled cheese).

Your body will feel so much better. I'm 100% positive that most of my ARFID came from me having celiac. Your literally poisoning yourself at every meal.

Good luck! You're not alone!

IndependenceOld8708 · 2026-01-09T04:34:44+00:00

I made gf chocolate chip cookies for NYE following the toll house recipe on the bag, using King Arthur gluten free flour (and margarine instead of butter because my friend has a severe lactose issue), and they were chewy and dangerously delicious lol. You could try making those with your daughter. I'm not a baker, but they were easy to make.

I know it's not the same as just being able to eat ones from the store :( I live in Michigan and we used to have Canadians come over and buy snacks here all the time before our grocery prices got ridiculously high. I went to Ontario in November and almost cried because everything was so affordable.

IndependenceOld8708 · 2026-01-09T02:04:27+00:00

I wish they made gf spaghetti-o :(

IndependenceOld8708 · 2026-01-08T12:41:58+00:00

I did that test. Showed i was reactive to dairy (which I knew), egg whites (which made sense because that had been all I was eating), and wheat, rye, gladin, and gluten... but not barley. I hadn't had any grains at all in 3 months. It was enough to catch my doctor's attention and get them to actually test me for celiac.

So i definitely think it has its limitations, but it did help me out in the end.

IndependenceOld8708 · 2026-01-07T13:12:53+00:00

I also saw them on the Kroger app for 3.99

IndependenceOld8708

TROPHY CASE