Are these conditions creating interrelated problems?

[Hellokittez]

Okay so I wanted to start by saying that I am new to the group, but not to celiac disease.  I had all the failure to thrive growing up (when I was a newborn the doctors actually accused my mother of starving me.  You can bet that didn't go over very well.)  There was also the lack of appetite, my growth was permanently stunted and I actually developed a form of dwarfism, go figure.  But yeah they actually discovered that my pituitary hormones are consistently under the levels they should be and my pituitary gland doesn't work like it should.  I talked to the doctor about it and he said as far as that I was stable, so it wouldn't have much effect now if we messed with it.  I ended up figuring out I had it several years before the doctors did and got an official diagnosis at age 21.  Huzzah!  Though as I am sure many found disappointment with it turned out to not be the end of it when I got my diagnosis, but the beginning.😕 Well I am now 29 and have tried for years to get a handle on it.  That brings us to my current question/struggle, you see like many of us I have multiple allergies and even two pain disorders thrown into the mix (I know fun right?🙄)  Well I always thought that there was something else that I had wrong, that everyone was attributing to other problems.  Well lo and behold I was diagnosed with a small uterine tumor that they basically just said was a fibroid and didn't look into it further, just asked me a few questions, told me it was too small to be a problem (about the size of a couple cherries and then referred me to a specialist.)  Well I have to wait for a month because everyone is completely booked and I was lucky to get that and I just suffered the worst glutening I have ever had in my history of ever being glutened!  It is still kicking my gut and it started early this morning.  I was jolted awake by a roaring pain just tearing through my lower abdomen and I was pouring sweat, nauseous and shaking.  I didn't know whether I felt cold, or hot all over and I ran for the bathroom and I had the worst dry heaving and D, my apologies for this being so descriptive.  It didn't seem to end.  The worst part still was the lower abdominal pain.  It was so bad I started dry heaving worse and almost fainted.  My fiancee saw me and was ready to rush me to the hospital at a moment's notice.  So on top of that I have had issues from the mass we'll call it for lack of specifics.  The doctors keep telling me that it isn't at a size that would normally cause problems, so I ask you folks, as a community who understands the strange complexities of celiac and the fact that we are not in the least bit normal by definition, am I right about this?  Am I nuts, am I possibly missing another issue, did the medical world once again get turned upside down and shaken, or am I some rare, unusual case that few know about?  I know they say not to self diagnose and all, but I live in Pennsylvania and they rarely ever have a flipping clue.  My issues just to clarify some things have been the anemia and strange m bleeding, again sorry for it being Tmi, I am just really stuck here.😩

[trents]

17 hours ago, Hellokittez said:

I ended up figuring out I had it several years before the doctors did and got an official diagnosis at age 21.  Huzzah!  Though as I am sure many found disappointment with it turned out to not be the end of it when I got my diagnosis, but the beginning.😕 

Are you referring to a celiac diagnosis here or the low pituitary hormone problem?

The cold sweats, nausea, vomiting, gastritis, diarrhea after being glutened is also my experience and is a common reaction for celiacs when they get glutened.

Edited September 30, 2021 by trents

[Scott Adams]

Welcome to the forum!

Quote

I was diagnosed with a small uterine tumor that they basically just said was a fibroid and didn't look into it further, just asked me a few questions, told me it was too small to be a problem (about the size of a couple cherries and then referred me to a specialist.)

I doubt this would be related to celiac disease, and you should definitely follow up with you doctor about it as soon as possible.

It may be too late, but this article may be helpful regarding getting glutened:

 

[Hellokittez]

13 hours ago, trents said:

Are you referring to a celiac diagnosis here or the low pituitary hormone problem?

The cold sweats, nausea, vomiting, gastritis, diarrhea after being glutened is also my experience and is a common reaction for celiacs when they get glutened.

I am actually referring to the tumor and the celiac disease.  I was wondering if they have any kind of direct connection.  I know that when I get glutened it causes pain with the tumor, but beyond that it's kind of a mystery and a curiosity to boot.

[trents]

We are regularly discovering new connections between celiac disease and other health problems so I wouldn't rule out a connection between the uterine tumor and celiac disease. Though, I would have to say I am not aware of any research in this area to substantiate your suspicion. 

Have you actually been diagnosed with celiac disease? So the diagnosis you refer to at age 21 was for the tumor and not celiac disease?

[Wheatwacked]

Quote

Vitamin D3 also functions as a strong antifibrotic factor. Additionally, recent studies have demonstrated that vitamin D3 is a potent antitumor agent that effectively inhibits human uterine fibroid cells in vitro and shrinks fibroid lesions in preclinical animal studies;   https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4209245/

On 9/29/2021 at 9:15 PM, Hellokittez said:

when I was a newborn the doctors actually accused my mother of starving me. 

In 1976, they told my wife to take valium because her stress was the cause in my 6 month old son. She found the right specialist and after a six month diet of Nutramigen, by one year old he was thriving on GFD.

[Hellokittez]

On 10/1/2021 at 12:08 AM, Wheatwacked said:

In 1976, they told my wife to take valium because her stress was the cause in my 6 month old son. She found the right specialist and after a six month diet of Nutramigen, by one year old he was thriving on GFD.

Honestly I think it's just doctors personal bias getting in the way at that point.  I had several tell me that I was just stressed, or it was all in my head, even after I kept vomiting from the celiac killing my gallbladder and my skin turned yellow.  I finally recieved a solid diagnosis of gallbladder disease and they were all like "oh" so she really wasn't just hysterical.🙄😠 The same doctors and types of doctors did the exact same thing yet again when I finally got a celiac diagnosis after the test failing 4 times because they hadn't come up with the blood test yet.  I was even illegally drug tested without proper consent at one point because they didn't know what was wrong, so they assumed it was all on me somehow.😒 So yeah let your wife know that I feel her pain.

[Wheatwacked]

While you are waiting for the specialist appointment try increasing vitamin D. It may shrink the fibroids (you really want to avoid surgery and there does not appear to be any other medical solution), it will help your other autoimmune sypmtoms. Try to get tested for vitamin D plasma level. (hint: insurance companies don't think it neccessary so doctors tend to be reluctant). You have several risk factors that may be causing or resulting from insuffient D. By autumn in Pennsilvania you are not getting any from the sun. In myself, as I approached 87 ng/ml  over the last 6 years the effects of being glutened have become less severe. At 250 mcg a day (10,000 IU on the old labels) you should notice improvement quickly.

"The mainstay treatment of uterine fibroid is surgery...recent studies have demonstrated that vitamin D3 is a potent antitumor agent that effectively inhibits human uterine fibroid cells ...Sometimes, uterine fibroids may be complicated by a variety of symptoms, including menstrual disturbance (e.g., menorrhagia, dysmenorrhea and intermenstrual bleeding), pressure symptoms, bloated sensation, increased urinary frequency, bowel disturbance or pelvic pain; therefore, definite treatment is requested."  Womens Health (Lond Engl). 2014 Jul;

This seems to match your description in your original post.  more quotes from the same study:

"The Al-Hendy group was first to report on the association between lower serum vitamin D level and increased susceptibility to uterine fibroids in 2012"

"Studies have demonstrated that vitamin D toxicity is very unlikely in healthy people at intake levels lower than 10,000 IU/day...These results demonstrated that vitamin D3 reduced fibroid tumor size."

"The new emerging role of vitamin D and its involvement in immune modulation has led it to be considered as a possible key factor involved in celiac disease (celiac disease) onset."   https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7231074/

 

 

[Hellokittez]

On 9/29/2021 at 9:15 PM, Hellokittez said:

Okay so I wanted to start by saying that I am new to the group, but not to celiac disease.  I had all the failure to thrive growing up (when I was a newborn the doctors actually accused my mother of starving me.  You can bet that didn't go over very well.)  There was also the lack of appetite, my growth was permanently stunted and I actually developed a form of dwarfism, go figure.  But yeah they actually discovered that my pituitary hormones are consistently under the levels they should be and my pituitary gland doesn't work like it should.  I talked to the doctor about it and he said as far as that I was stable, so it wouldn't have much effect now if we messed with it.  I ended up figuring out I had it several years before the doctors did and got an official diagnosis at age 21.  Huzzah!  Though as I am sure many found disappointment with it turned out to not be the end of it when I got my diagnosis, but the beginning.😕 Well I am now 29 and have tried for years to get a handle on it.  That brings us to my current question/struggle, you see like many of us I have multiple allergies and even two pain disorders thrown into the mix (I know fun right?🙄)  Well I always thought that there was something else that I had wrong, that everyone was attributing to other problems.  Well lo and behold I was diagnosed with a small uterine tumor that they basically just said was a fibroid and didn't look into it further, just asked me a few questions, told me it was too small to be a problem (about the size of a couple cherries and then referred me to a specialist.)  Well I have to wait for a month because everyone is completely booked and I was lucky to get that and I just suffered the worst glutening I have ever had in my history of ever being glutened!  It is still kicking my gut and it started early this morning.  I was jolted awake by a roaring pain just tearing through my lower abdomen and I was pouring sweat, nauseous and shaking.  I didn't know whether I felt cold, or hot all over and I ran for the bathroom and I had the worst dry heaving and D, my apologies for this being so descriptive.  It didn't seem to end.  The worst part still was the lower abdominal pain.  It was so bad I started dry heaving worse and almost fainted.  My fiancee saw me and was ready to rush me to the hospital at a moment's notice.  So on top of that I have had issues from the mass we'll call it for lack of specifics.  The doctors keep telling me that it isn't at a size that would normally cause problems, so I ask you folks, as a community who understands the strange complexities of celiac and the fact that we are not in the least bit normal by definition, am I right about this?  Am I nuts, am I possibly missing another issue, did the medical world once again get turned upside down and shaken, or am I some rare, unusual case that few know about?  I know they say not to self diagnose and all, but I live in Pennsylvania and they rarely ever have a flipping clue.  My issues just to clarify some things have been the anemia and strange m bleeding, again sorry for it being Tmi, I am just really stuck here.😩

So to update I have been set up for several tests, have been to the er twice waiting to get to appointments and finally managed to see a gyno specialist and then another one whom I found I trust the judgment of a lot more.  They are putting me on progesterone to stop things and hopefully control some of the bleeding until we get a better handle on things.  The er visits are because I have started having pain that isn't helped by anything really, the nausea has gotten worse and I have hooray, rectal bleeding!😒 When that happened I also passed out on the living room floor and found out later during that second gyno appointment, that my blood pressure was low.  Mind you when I was in the er, they told me they couldn't find anything, couldn't actually do the tests needed despite being a thing that you actually go there for, gave me some iv fluids, some nausea meds, a bottle of tylenol the size of my fist through iv (that is not an exaggeration either, that thing was huge!) and sent me home and told me to follow up with the doctors who I hadn't been able to get reasonably timed appointments with and that's why I was there.🤷🏻‍♀️🤦🏻‍♀️ So been trying some herbal supplements that I read about in another post on here for not just glutenings, but also taming the beast so to speak, seeking out gluten free supplements, which companies seem to change the labeling of like they change their underwear and trying to get in to see doctors and get them to take it seriously before I either bleed out, or my heart explodes from the strain of everything.  The best the er doctor could give me despite my history is that when I saw the blood I panicked and fainted because I was scared.😑 I mean forget that I have been through hell and back so to speak, I mean what celiac hasn't?!  Have experienced way more frightening and disturbing things than that and have never once fainted from any of it, but I am suddenly having passing out episodes and it's because I am scared of the blood.😩 Right.

[Danders]

On 9/30/2021 at 11:08 AM, Scott Adams said:

Welcome to the forum!

I doubt this would be related to celiac disease, and you should definitely follow up with you doctor about it as soon as possible.

It may be too late, but this article may be helpful regarding getting glutened:

 

HI new here  i am gluten intolerant have been trying to find better foods recipes that eliminate the bloating and swelling and find natural solutions to wrinkles and hypertension  and get off these synthetic  poisons ...anyone.? Thanks! 

[Wheatwacked]

This works for me. Get sunlight or supplement vitamin D. It's only 4% RDA. Calcium is 96%. Niacin 81%. Everything else >125% min RDA. 2600 calories. mix and match. I microwave the potato. For some reason the potato and a cup of coffee at bedtime helps me sleep.

18 hours ago, Danders said:

better foods recipes that eliminate the bloating and swelling and find natural solutions to wrinkles and hypertension  and get off these synthetic  poisons