My Experience Post Diagnosis

[AKohlmeyer]

So, I'm 34 now, and I was diagnosed at 26 (had them put a camera down in there when I was under and everything). Now for me this actually seemed like great news because I felt horrible. Stomach issues of course, but extreme fatigue, physical and mentally. Just terrible. 

So began my gluten-free life, and I was very vigilant about it(still am). Looked up everything, I tried to keep to things that were actually gluten-free and not FDA gluten-free. Taking vitamins since I knew I wasn't absorbing them well before. I took those yearly tests at the gastroenterologist that somehow told you if you had been eating gluten-free(never really understood how that worked) and passed. Bottom line is that there where some slight stomach improvements and nothing else.

I continued to get worse to the point now that I can't hold a job (before it was generally 3 months attempting to keep it together but always having too many sick days).  Naturally I've been to doctors about anything and everything else, I'm unfortunately resistant to every type of anti-depressant and the one type of treatment TMS that did help insurances will only cover one run of it of course, because we all know that you take a month of anti-depressants and your cured...and in general I feel a lot of doctors just are terrible at their job. I also have psoriasis, which clearly my immune system is a fan of overreacting. I have sinus issues and just a constant ball of phlegm in the back of my throat that when I could go to an ENT, none of the things they tried worked. And the main thing is that up until a year ago I was still able to be on my mom's insurance through a medical exception and note from my doctor, but unfortunately my mom can no longer work either now.

I'm just wondering if anyone else experienced this type of thing where you where diagnosed and either didn't see much of any improvement or even just much less than you expected. I know it would seem I have more things going on medically unresolved, but to have no change on the thing that is the most debilitating with the fatigue was pretty soul crushing. I mean at this point it's kinda moot barring the answer falls in my lap because I have garbage insurance and just such a hard time even explaining things to doctors without rambling like this... I guess I just want to hear how things changed for you, if it did make you feel a lot better or not.

[cristiana]

Hello AKholmeyer

Welcome to the forum.

I am so sorry to hear that you are struggling like this, but every celiac's story is different. 

Some of us really bounce back soon after the adoption of a gluten free diet, for others there is gradual improvement, and others still would say they never really feel too brilliant, despite being really strict.  It's kind of a mixed picture for me - I'd say that although I feel a lot better in some ways (the crushing anxiety that I had at diagnosis has gone, for example) I still have a lot of gastric issues and rarely have a day when my digestion isn't playing me up in some way.  Since diagnosis I've been diagnosed with IBS, silent reflux (that can cause phlegm build up, by the way) and I also suffer from bouts of gastritis.

Sometimes people struggle because there's gluten sneaking in somewhere, or there are other issues with other foods, or because there are other auto-immune conditions that have so far gone diagnosed.  It can be quite a puzzle, trying to put all the pieces together, can't it?

Have you had any follow up blood tests or endoscopy results that have shown signs of improvement, at least on paper?  That would be interesting to know. 

Also, has your thyroid ever been looked at?  Thyroid problems could make you feel very tired.  Also, do oats (even the pure variety) still feature in your diet, or soy?  These foodstuffs can affect some celiacs adversely.  

Cristiana

 

Edited December 4, 2021 by cristiana

[trents]

If you are still using oats and dairy you might try eliminating these as their are proteins in these two that blunt the villi of the small bowel for some celiacs as does gluten.

"I took those yearly tests at the gastroenterologist that somehow told you if you had been eating gluten-free(never really understood how that worked) and passed." Are you talking about an antibody blood test? This is where most people start when getting a celiac diagnosis and then go from there to the endoscopy/biopsy but your experience seems to be that the doctor skipped that and went right to the scoping. Anyway, the antibody blood test can also be used for follow-up care to check on progress. When you say you pass them do you have access to the actual scores? May doctors, even GI docs, lack much knowledge about celiac disease and will interpret low positives on the test as meaning there is no inflammation happening from gluten and that you are doing okay. Not true.

[AKohlmeyer]

Yeah, I don't have the results of these tests, but I did originally have the blood tests to tell me if I possibly had Celiacs before I did the little camera, I just meant in the sense of I 100% have had pictures of those little hair looking things being very singed. 

I also don't understand why these tests or anything from my Gastroenterologist aren't in my online chart either. Like I said these yearly test that somehow tested my gluten intake made no sense to me and seemed suspicious. I'm currently on a insanely long wait to see a new Gastroenterologist(June).

I have been trying to eliminate things from my diet to try and see if that helps as well. One thing that I've also been very determined on cutting out is as much sugar as possible, and even after a month that is one thing I feel has actually helped so far(Not particularly surprising since I knew how bad it is for you, but obviously delicious)

[yuluyouyue]

26 minutes ago, AKohlmeyer said:

Yeah, I don't have the results of these tests, but I did originally have the blood tests to tell me if I possibly had Celiacs before I did the little camera, I just meant in the sense of I 100% have had pictures of those little hair looking things being very singed. 

I also don't understand why these tests or anything from my Gastroenterologist aren't in my online chart either. Like I said these yearly test that somehow tested my gluten intake made no sense to me and seemed suspicious. I'm currently on a insanely long wait to see a new Gastroenterologist(June).

I have been trying to eliminate things from my diet to try and see if that helps as well. One thing that I've also been very determined on cutting out is as much sugar as possible, and even after a month that is one thing I feel has actually helped so far(Not particularly surprising since I knew how bad it is for you, but obviously delicious)

Hi, these yearly tests are probably testing antibodies and are not useless. If you have not been ingesting gluten they should be negative. Granted, only another scope can show if your villi healed but it is much less invasive to test antibodies regularly. 

[AlwaysLearning]

I would consider the possibility that you're dealing with something else entirely, not related to celiac. Granted, having gluten reactions might be what originally amped up your immune system, but it could be remaining on high alert because there is something else in your environment to react to.

Can you send a sample of your drinking water off to be tested? Do you possibly have mold or mildew in your home? Do you live near any sort of industrial facility that could be affecting you, such as near a fracking site or petroleum refinery? Even something as seemingly as insignificant as breathing in the fumes from standard clay cat litter could be enough to trigger an immune response if your system is already on high alert.

And if someone hasn't already said it or you haven't already done it, get tested for vitamin deficiencies then carefully supplement only those you actually have. (Most supplements are not bio-identical and come with their own side effects, so I would not be too eager to start popping pills just because most of us have certain deficiencies.)

When it comes to hidden sources of gluten, I would look to the weird sources too. I've heard of people discovering that their dental appliances such as retainers or bite plates contained gluten (used to make plastics more flexible). I swear I had a pair of reading glasses that must have contained gluten because they made the sides of my head go numb after about a week of using them.

Because you still have psoriasis acting up, I would presume that this is still autoimmune related. I say that because before I went gluten free, it seemed as if one autoimmune disease decides to throw a party and invite over a bunch of others. Psoriasis sounds like that guest that just won't wake up after sleeping on the couch. But you have to figure out if it was gluten that threw the party or something else.

I can leave you with one tip that could help how you feel about all of it. The brain constantly rewires connections between one section and another. Just thinking ten happy thoughts in a row is enough to have your brain set to be in a happier default setting, so to speak. So finding ways to laugh about the struggles really can help you get through them.

Anyway, I do wish you the best of luck with it all. It sounds rough for you at the moment and I do wish there were more we can do to help as you deal with the damage gluten leaves in its wake. 

[AKohlmeyer]

Yeah, you could be very right with issues coming from mold and things like that. I live in a pretty small city that is about 25 minutes out from actual cities and there isn't much of anything going on around here to my knowledge... but obviously the biggest issue is that I have obviously have no money. I live with my dad who is the exact opposite in every way and basically will try to fix something with duct tape before going to a doctor, and just doesn't understand my issues in the slightest. So, yeah it's pretty rough, especially with the system we have in the US with healthcare and just the fact that it makes no difference if the doctor actually helps in any way, the bill is the same.

But I do only take vitamins according to the blood tests and at this point it's only Vitamin D that isn't getting into the normal. Like Vitamin D (I don't remember the exact value just as a reference) at best gets to like 33 if the normal range is 30-100. I've done the super prescribed amounts and try to get as much natural sun as I can but I live in Oregon so...

And I don't know what other people experience with accidental ingestion of gluten, but for me it certainly isn't sudden and is generally only stomach issues. But then again I have such a hard time remembering what normal feels like since I basically started having issues with fatigue around 20 and things just slowly continued to worsen. 

I know I sound super negative, but I do appreciate and suggestion and will definitely try to look into any possible refineries, etc that could be in the area and basically anything else I can do that is free and easy to do so.

[AKohlmeyer]

2 hours ago, yuluyouyue said:

Hi, these yearly tests are probably testing antibodies and are not useless. If you have not been ingesting gluten they should be negative. Granted, only another scope can show if your villi healed but it is much less invasive to test antibodies regularly. 

Ok, thanks, that is good to know. It was mainly that it was so hard to actually get information to simple questions like what the test did exactly(basically call and leave them that message to ask the doctor and never hear back).

Frankly the doctor was a bit of an ass and I can only hope the new one is nothing like him.

[Wheatwacked]

keep up with the vitamin D. At higher blood plasma levels around 70 ng/ml it helps with depression, and attenuates the autoimmune responses. I have been taking 10,000 IU a day for over 6 years and finally got to 87 ng/ml in September. It is safe. Three article worth reading about vitamin D.

https://www.mayoclinicproceedings.org/article/S0025-6196(15)00244-X/pdf

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2908269/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7231074/