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Adult Onset, Newly Diagnosed

GladGirl

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GladGirl Rookie
GladGirl
Posted

Well, a new journey late in life!! I remember hearing my Uncle telling me about 15 years ago that he was diagnosed as a Celiac and when I asked he told me he could not eat wheat products. My reply to him was "I hope I never get that disease, I love breads too much!" And now here I am making new types of breads gluten free.

My symptoms? Where do I start? There are so many, but hidden all these years from the real cause. I had a miscarriage and a stillborn daughter, but I also have living daughters. Weight gain problems when it just did not make any sense all my life! I do not overeat, never have, and this "bloated" feeling. But no IBS symptoms per se, maybe once in awhile, but many people get those "once in awhiles". Then about 8 years ago, I had pain in my right side during my physical exam when the Dr. palpated the area. OUCH! She ordered a HIDA scan, my gallbladder was not doing its job, called dyskenesia. ??? Also my liver enzymes were slightly elevated, the ALT and AST were over the norm by about 10. So....out with the gallbladder without unknown etiology and a liver biopsy which hurt a lot, but showed no specifics except a bit of fatty infiltration.

Two years later, the liver enzymes increasing in elevation, had a ultrasound...nothing notable, two years ago, higher elevated enzymes, another ultrasound...again nothing. In the meantime do I need to tell you how many medical professionals did NOT believe me when I said I did not drink alcohol! During the surgery to remove my gallbladder, during the times I had to see new Dr.'s because we moved to another state...ugh!

And then, the light came on, because of my younger brother by 3 years. He too started having elevtaed liver enzymes and we were both complaining about extreme shoulder pain, mine in the right, his in the left. We were a sorry pair! LOL, but I told my Dr. this has to be something inheritable. He agreed. My brother and I are the only ones left...our mother died from suicide when we were young (she was bi-polar), our father died in a car accident, our sister died from burns in a house fire, and our other brother died at age from a sudden cardiac arrest. The only other key was my Uncle, and his symptoms were not the same.

My Dr. sent me to a hemotologist to run the gammit of possible disease including Celiac. And now, two months on the gluten free diet, I have lost almost 20 lbs, the pain in my shoulder is almost completely gone, and I can "feel" my bones. I am sure a lot of the weight I have lost is "water" from edema! The pain in my shoulder being caused by extreme inflammation, now is abating. Wow! This girl is glad to be able to enjoy life again!

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jigsawfallingintoplace Newbie
jigsawfallingintoplace
Posted

Hi and welcome :)

You will be in good company here I promise.

WOW, what a story and what an ending - I say ending but really it is just the beginning of hopefully continued better health that you are now experiencing!

I can feel the high you are on after finally discovering what was wrong - you sound elated and I am elated for you.

I feel the same high and I am a tiny bit further along the path by about 2 months but its a good feeling isnt it!

I have made errors along the way but with the good grace and knowledge of the lovely people in this community, i feel sure that I will get through this and come to serve others in time who need support too.

Keep us posted on how its going!

:P

MitziG Enthusiast
MitziG
Posted

So glad you were finally diagnosed! Many of us here went thru the gamut of seemingly unrelated symptoms and dismissive doctors before stumbling onto gluten as the cluprit. I really wish they would just do routine testing for celiac! I do hope your brother is getting tested asap?

GladGirl Rookie
GladGirl
Posted
  • Author

:) >>>Jigsaw Thank you for welcoming me to this site. I actually have spent time here and have read so much about other experiences here. Along with that the many links and reports here are helpful as well.

I read some of your other posts and realize you are so new at this too! The journey we are on is certainly a challenge. There can never be enough support, since in any disease the contributing factors of environment and other health problems can cause so many differences.

>>>Mitzi, words of widsom from someone a little more experienced is so helpful. Yes, my brother is being tested. He was in "denial" at first when I told him, but he decided after visiting me (he lives in AZ, I live in FL)and seeing my reports that he should. We have both wondered if our mother's bi-polar, our sister's bi-polar and our brother's sudden cardiac arrestn at age 50(unexplained)and my daughter's stillbirth were related to Celiac??(I was also anemic most of my child-bearing years) Guess we will always wonder. Like you, I do believe some type of testing should be done for this regularly. If one in 100-130 people in the U.S. have this...ummm..I think the statistics speak for themselves for a NEED! The good news is, the medical professionals are waking up to this.

I am sure that my immediate family members are a bit tired of hearing about Celiac as much as I have encouraged them to get tested. My niece, the daughter of my deceased brother, is getting tested as well. My uncle who had Celiac just passed away at a ripe age of 83. He went off his gluten free diet about a year ago when his wife of over 60 years died...he gave up because he said he was ready to go "home". CHF and COPD were the cause of his death.

In a couple of weeks my liver enzymes are to be tested and I am hoping they have gone down as they should. At least I never paid for the expense of having an MRI on my right shoulder! Also, I work for a Dr. who is not my regular Dr...I am a PCT, patient care tech. These two internal med Dr.s don't even agree on procedure from here. Due to higher cholesterol levels (storage of fat by the intrinsic gluten intolerence)my Dr. prescribed a statin...the Dr. I work for says NO! At this time I am hoping the gluten-free diet does it's work, and no drugs are needed!

I read where you are also looking into other types of allergens affecting your health, and I am keeping a watchful eye as well. Comparing notes as we journey will be a good support, and I thank you for welcoming me here.

:)

MitziG Enthusiast
MitziG
Posted

Re cholesterol drugs: studies have PROVEN that eating 2 apples a day is MORRE effective than statins for lowering cholesterol. Google it, you will see the proof is not just anecdotal. Statins are HUGE $$' apples are not making anyone rich.

Statins are very damaging to your liver. Why take something that is dangerous and less effective?

_

GladGirl Rookie
GladGirl
Posted
  • Author

Mitzi,

Oh, yes, I agree!! Statins are certainly not a place I want to go!! Can you believe it?? When I mentioned that statins can cause more liver problems to my Dr. he actually "yelled" at me, saying do you want me to help you or not?? I told the Dr. I work for about this, and he said, he thinks my Dr. is in over his head. Ya think?? Thing is, this Internal medicine Dr. is the one who has helped my hubby with his diabetes type II so well. Guess I need to find another Dr. Researching this, the hemotologist I went to said he did not need to see me again after my blood tests revealed "positive" Celiac.

The Dr. I work for is in a "specialty" that would not allow me to be his patient, although he gives me great advice. He suggests I go to a gastro....in the meantime, I do have bloodwork coming up ordered by the "yelling" Dr. that I want to have done to see how my Liver enzymes are doing. (NO I have not taken the statin...!!!)

beachbirdie Contributor
beachbirdie
Posted

You are aware that "fatty liver disease" (or, non-alcoholic cirrhosis) is strongly related to celiac?

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GladGirl Rookie
GladGirl
Posted
  • Author

Oh, yes, I do now Birdie!! When I read up on how the "leaky gut syndrome" which is caused by the gluten intolerence and therefore can generate the body into storing fat since it feels threatened by malnourishment...it made so much sense! My poor liver, all these years...anyway, I feel so much better in just 8 weeks of being gluten free. The inflammation in my right arm (rotator cuff area) is almost completely gone and I again have full movement.

Since I was diagnosed through the blood tests, I really do not want to have to go back to gluten just so a Gastro Dr. can do an Endo just to be sure!! Really?? My liver biopsy was enough for me when my gall bladder was cut out...enough of "body invasion" for me right now.

Getting my liver enzymes checked right now is so important to me, just to be sure they are going down...and then...I may go to a gastro, really would like to find a hepatologist, but none are here in Florida close to me.

beachbirdie Contributor
beachbirdie
Posted

Oh, yes, I do now Birdie!! When I read up on how the "leaky gut syndrome" which is caused by the gluten intolerence and therefore can generate the body into storing fat since it feels threatened by malnourishment...it made so much sense! My poor liver, all these years...anyway, I feel so much better in just 8 weeks of being gluten free. The inflammation in my right arm (rotator cuff area) is almost completely gone and I again have full movement.

Since I was diagnosed through the blood tests, I really do not want to have to go back to gluten just so a Gastro Dr. can do an Endo just to be sure!! Really?? My liver biopsy was enough for me when my gall bladder was cut out...enough of "body invasion" for me right now.

Getting my liver enzymes checked right now is so important to me, just to be sure they are going down...and then...I may go to a gastro, really would like to find a hepatologist, but none are here in Florida close to me.

Got my fingers crossed for your enzyme reduction! So glad to know you are feeling so good!

Curtis721 Newbie
Curtis721
Posted

You are aware that "fatty liver disease" (or, non-alcoholic cirrhosis) is strongly related to celiac?

No kidding! I just went for my celiac blood test today. I was told about 2 years ago that I had a fatty liver. I don't drink, but the Dr didn't believe me.

GladGirl Rookie
GladGirl
Posted
  • Author

No kidding! I just went for my celiac blood test today. I was told about 2 years ago that I had a fatty liver. I don't drink, but the Dr didn't believe me.

Isn't that the MOST annoying and "hurtful" situation?? I understand that many people do not actually tell the truth if they are "aloholics", but when a Dr. sees the ALT/AST ratio, that in itself should tell them. My ALT is higher that my AST which indicates "fatty infiltration" rather than alcoholism; but if you try to remind the Dr. of that...ummmmm...they really get upset, well now they know how we feel!! LOL

lucky28 Explorer
lucky28
Posted

Hi, just wanted to put in my 2cents. Just prior to my Celiac dx, my liver enzymes came back high too, as well as my cholesterol. My general dr wanted to put me on a statin, (as well as antidepressants for IBS!lol) but I never filled the prescription either. I had already made an appt with gastro for testing, had done my research and knew that in addition to my gi symptoms, my elevated liver #'s could be due to celiac.

After celiac diagnosis and 6 months gluten-free my follow up blood work showed my liver enzymes not only in the normal range but in the low end of normal! In addition my bad cholesterol is falling (slowly) and my good cholesterol is rising!

Hang in there, watch out for cc and hopefully your levels will correct themselves as you heal too!

GladGirl Rookie
GladGirl
Posted
  • Author

Hi, just wanted to put in my 2cents. Just prior to my Celiac dx, my liver enzymes came back high too, as well as my cholesterol. My general dr wanted to put me on a statin, (as well as antidepressants for IBS!lol) but I never filled the prescription either. I had already made an appt with gastro for testing, had done my research and knew that in addition to my gi symptoms, my elevated liver #'s could be due to celiac.

After celiac diagnosis and 6 months gluten-free my follow up blood work showed my liver enzymes not only in the normal range but in the low end of normal! In addition my bad cholesterol is falling (slowly) and my good cholesterol is rising!

Hang in there, watch out for cc and hopefully your levels will correct themselves as you heal too!

Thank you Lucky! Yes, and that is the "case" for me. It sure did take quite awhile for the dx on the correct side of things. I am just so sorry my gallbladder is gone...but, I am doing quite well without it. But you were smart to go to a gastro in midstream, I just didn't have any "IBS" symptoms!! But, my cholesterol levels did go up and my liver enzymes as well. I am thankful that my uncle told me about his Celiac, although he did not have the same symptoms as me. He lost weight, developed osteoporosis, COPD, to name a few...

Today I went to do my bloodwork, so a week from now, I see the Internal Med Dr. for the results, and yes, I never did take the statin!! I hope my diligence in being gluten free has really made a difference in the numbers, but if not, I feel so much better anyway!! :)

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