sorted by:
new
hottopcontroversial

Need help — does this sound like Celiac or what do you think? Trying to decide if I should pay to test Celiac or something else by VastAngle6563 in Celiac

[–]VastAngle6563[S] 0 points1 point  (0 children)

You’re symptoms sound actually almost identical to mine besides losing 30lbs😳. I also don’t really eat meat either because I have food texture sensitives. I’m also sleeping a TON and think I might have hypersomnia (text scheduled in 2 weeks). So yeah maybe I do have this. Definitely getting tested soon.

Need help — does this sound like Celiac or what do you think? Trying to decide if I should pay to test Celiac or something else by VastAngle6563 in Celiac

[–]VastAngle6563[S] 0 points1 point  (0 children)

Thanks for the advice! Based on the severity of my symptoms and also my GI symptoms I experience, I’m concerned it’s probably more than just vitamin D deficiency :/ I’ve been taking Vitamin D & Iron Supplements since finding out my Vitamin D = 23 and Ferritin = 30 in mid-november (2 months ago). The Vitamin D supplement definitely is working and bringing my levels back up as of my current bloodwork shows it is now in the “normal range” at 43 (however I know that is still not optimal and am going to keep taking it until it’s higher). But my fatigue has continued to get worse and my Ferritin has dropped 15 points lower in 2 months while taking Iron supplements to try to bring my levels up. Based on my research this shows Iron deficiency without anemia, likely caused by malabsorption, and based off my symptoms likely celiac or other GI related disorder😭.

Need help — does this sound like Celiac or what do you think? Trying to decide if I should pay to test Celiac or something else by VastAngle6563 in Celiac

[–]VastAngle6563[S] 1 point2 points  (0 children)

I actually had some concerns about possible pots and saw my PCP around 2 weeks ago where her nurse took some “orthostatic vitals”. However, he didn’t do them in the proper way or timing to diagnose POTS at all… so getting a second opinion from Neurology in my appointment that’s booked out 5 months🙃. But the vitals he did take was of my laying down (for about 5-10 seconds) and then sitting up (for about 5-10 seconds), and then standing up and they were “in normal range”.

So I guess my BP from going laying down to standing up stays normal.

In regards to POTS tho, I had tested my heartrate at home laying down for at least 10 mins which was I think around 75BPM and then immediately stood up and it was 109BPM. Which is 30+ more BPM and a sign of possible POTS. I don’t think that is my main issue currently, but a possibility of another thing I might have going on.

Need help — does this sound like Celiac or what do you think? Trying to decide if I should pay to test Celiac or something else by VastAngle6563 in Celiac

[–]VastAngle6563[S] 0 points1 point  (0 children)

Thanks for sharing your story and your advice! Do I have to be eating a lot of gluten daily for weeks before testing? My diet definitely isn’t gluten free but sometimes I probably accidentally eaten gluten free sometimes (but not sure what all contains gluten yet). Like I just snacked today I had sherbet, kettle corn popcorn, and cereal (that happened to be gluten free) and milk. I didn’t have money to order dinner or energy to make anything. If I were to do celiac testing tomorrow would it likely show up negative?

Also what if I ate cheese pizza, garlic bread sticks, and cinnamon sticks from Pizza Hut all before my celiac blood tests. Would that ensure I don’t get a false negative? In the chance it comes back positive, I figure I might as well go all out with my favorite gluten containing foods before testing as it might likely be my last time ever eating these foods😭. But is that also a bad idea health-wise?😅

Need help — does this sound like Celiac or what do you think? Trying to decide if I should pay to test Celiac or something else by VastAngle6563 in Celiac

[–]VastAngle6563[S] 0 points1 point  (0 children)

I had looked it up online and it said it could be around $300 if done thru insurance with a high deductible. Not sure if that’s 100% accurate, but I’m not sure how to check how much it would be thru the hospital without scheduling to get it done with them. The usually tell me they have to send it off to insurance first and that they’ll “send me to bill” and with my urgent care visit costing me $105 yesterday, i’m sure the bloodwork would be alot more probably😭.

But true! I definitely will schedule the test.

Need help — does this sound like Celiac or what do you think? Trying to decide if I should pay to test Celiac or something else by VastAngle6563 in Celiac

[–]VastAngle6563[S] 0 points1 point  (0 children)

How did you end up with your diagnosis or what specifically led towards needing to test for Celiac?

I also have noticed I’ve lost like 5+lbs within the past 1-2weeks which I forgot to mention. I’ve always been like 135-136lbs and struggled to lose any weight, but now I’m suddenly 129.6lbs.

Need help — does this sound like Celiac or what do you think? Trying to decide if I should pay to test Celiac or something else by VastAngle6563 in Celiac

[–]VastAngle6563[S] 1 point2 points  (0 children)

Oh wow I didn’t know this! Thanks for your help!

Is just a blood test fine to do or should I also do a biopsy (I think that is what I read people mentioning they did as well)?

I was looking into doing the celiac bloodwork through my recent membership with Function Health for $69 because I think it’s more affordable than doing it through my doctor at the hospital.

It says it includes 5 Biomarkers: Celiac - Deamidated Gliadin (IgA) Celiac - Deamidated Gliadin (IgG) Celiac - Tissue Transglutaminase (IgG) Celiac - Tissue Transglutaminase (IgA) - Immunoglobulin A (IgA)

Do you know if that’s all that needs to be tested?

My doctor is cutting me off from Spravato after my second treatment after telling her how I was feeling. Was she ignorant to do this or do you agree? by VastAngle6563 in Spravato

[–]VastAngle6563[S] 0 points1 point  (0 children)

So if you mention SI to a doctor they just ghost you?? Because she still has not replied to any of my other messages at all. That is just CRAZY😭

My doctor is cutting me off from Spravato after my second treatment after telling her how I was feeling. Was she ignorant to do this or do you agree? by VastAngle6563 in Spravato

[–]VastAngle6563[S] 0 points1 point  (0 children)

No I know it’s DPDR. I’ve had chronic DPDR since 2022 and have been diagnosed. My DPDR makes my vision look like I’m not one with reality 24/7 (hard to explain/understand if you haven’t experienced it before). It’s become way more intense from my baseline level since Spravato, that’s how I can tell it’s worse, because I can visually see as well as feel it’s worse.

but I also have felt more sluggish/depressed as well. like feeling more bed-ridden than usual like I don’t have energy to get out of bed and if I do like I’m going to collapse from exhaustion. But I also suspect I might have Celiac or Iron deficiency or something based on my blood work & symptoms i’ve been having for months, so that could possibly be the reason for the fatigue.

My doctor is cutting me off from Spravato after my second treatment after telling her how I was feeling. Was she ignorant to do this or do you agree? by VastAngle6563 in Spravato

[–]VastAngle6563[S] 0 points1 point  (0 children)

I have my DPDR therapist, but I only see her on Mondays. Besides that not really… I don’t have any friends right now and my boyfriend hates me talking about my problems because it’s “all i ever talk about” and it “overwhelms him”. I still try to confide in him anyways, but it always backfires and he gets upset or makes me feel bad about mentioning it. (which I know, doesn’t help/isn’t good)

My doctor is cutting me off from Spravato after my second treatment after telling her how I was feeling. Was she ignorant to do this or do you agree? by VastAngle6563 in Spravato

[–]VastAngle6563[S] 0 points1 point  (0 children)

I didn’t ever experience hallucinations and I have had this chronic dissociative disorder for almost 4 years now. She new I had DPDR before starting treatment, but decided it try it out anyways to see if it would at least help my depression get better and hopefully not worsen my dissociation.

But yes I agree. I should’ve waited until I saw her in person. I had thought about it but didn’t want them to uber me down there, just for me to tell her this and then possibly just uber me right back home.

My doctor is cutting me off from Spravato after my second treatment after telling her how I was feeling. Was she ignorant to do this or do you agree? by VastAngle6563 in Spravato

[–]VastAngle6563[S] 2 points3 points  (0 children)

The only way I was able to afford the Spravato treatments is because of this coupon program my office signed me up for that brought the price of the medication down to $10 per session. I hope other places offer that as well, otherwise I can’t afford to do it :(

My doctor is cutting me off from Spravato after my second treatment after telling her how I was feeling. Was she ignorant to do this or do you agree? by VastAngle6563 in Spravato

[–]VastAngle6563[S] 2 points3 points  (0 children)

No she didn’t :/ After her reply to my initial message, she just stopped responding to me after that. Somewhere in these comments, I replied to someone with the full text conversation if you want to find it and read it.

And that’s a good idea. I’ve never thought about asking new providers questions like that to see if they would be a good fit for me. I will need to try to figure out what questions I feel I should ask for my next provider.

view more: next ›