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Finally! I Think I Am Gettin Somewhere!

Wolicki

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Wolicki Enthusiast
Wolicki
Posted

I was dx with celiac disease 4 months ago. Shortly after going gluten-free, by body went haywire. I was sick for 10 years, so I guess everything just went kaplooey on me. I developed massive edema (35 pounds in one day). My doctors kept saying they thought it was a side effect of malnutrtition called "refeeding edema." It's almost like they all had a pow-wow (all 6 of them!) to say, "yeah let's tell her that!" It's been over 3 months and it's getting worse. I developed hypothyroid, too. Of course, none of my doctors knew how to treat this edema. Their standard answer was "give it time."

So, here I am bloated, in pain and no one will do anything. I ended up contacting the University of Maryland Medical Center through and "ask the expert" thing on the web. Igot an email from them immediately, offering the services of a team of doctors to work with me and my doctors to figure it out- PRO BONO!

To make a long story short, they spent more time questioning me and evaluating labs, symptoms etc, all through email, than any of my SIX doctors have. I believe they have figured it out and have arranged further testing to confirm. It's not good news in that I probably have major kidney problems, but at least it's a dx that can be teated. They also have ordered all the tests (and more) that should have been run on me upon dx of celiac disease, that my doctors refused to order. By this time next week, I should no exactly what nurtritional deficiencies I have, instead of having to guess. They are also running tests for additional autoimmune disorders.

Thank God for the angels at UMMC! The reason I am posting this is 1) to thank all of you for suggesting things to try when I couldn't get a medical professional to even look at my deficiencies and 2) to ask why it is that strangers 3000 miles away have taken more of an interest in my well being than the doctors here at home whom I have entrusted with my health?

I hope you will keep a good thought for me as I go through this new odyssey with my kidneys. I see you all as part of my family. I mean, come on, you all don't tell your family about your poop, but you tell us :lol:

The best to all of you!

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mushroom Proficient
mushroom
Posted

If you get any help with your kidneys and edema, I would be very grateful if you would share it with us here. This is a battle I have been fighting for more years than I care to count, and it is getting worse instead of better with gluten free. I fear these docs might kill me some day with their "solutions", including those in the U.S., where I ended up in the ER during my visit while under the care of a nephrologist :unsure: . They have come close.... :o

ravenwoodglass Mentor
ravenwoodglass
Posted

I hope they have some answers for you and I think it is wonderful that the doctors in Maryland are stepping up to the plate for you. You deserve to give yourself a big pat on the back for continueing to search for answers and your doctors at home deserve a kick in the rear for not listening. I hope things improve soon.

Wolicki Enthusiast
Wolicki
Posted
  • Author
If you get any help with your kidneys and edema, I would be very grateful if you would share it with us here. This is a battle I have been fighting for more years than I care to count, and it is getting worse instead of better with gluten free. I fear these docs might kill me some day with their "solutions", including those in the U.S., where I ended up in the ER during my visit while under the care of a nephrologist :unsure: . They have come close.... :o

I am going today to see the nephro. can you please pm me and let me know what type of kidney problem you have and what treatments they have tried and made worse? I will share all I learn here!

Crimson Rookie
Crimson
Posted

I am so happy for you! It is wonderful to know that there are doctors out there that are willing to investigate a person's issues! I've been thinking about this a great deal lately... trying to find a doc to go to that will look into any possible answer for my issues. I'm glad you found a team of them! Congrats.

I really hope they can get you where you should be and soon!

Wolicki Enthusiast
Wolicki
Posted
  • Author

went to the nephro today. I left the office and sat in my car and cried until my head ached. He said on that yes I do have some kidney function issues (which he never mentioned before) my kidneys are not causing the edema, neuropathy and blurry vision (all of which are symptoms of kidney disease on the Kidney Foundation website. He said that if my kidneys were casuing this problem, I would also have high BP and diabetes. Then he insinuated that I had just gained some weight, because the edema I have is interstitial and not pitting edema. I asked him to explain to me how I could have gained 35 pounds in one day. He had no answer. Even though my labs show chronic kidney issues he will not treat it. No diuretics, no ace inhibitors, no vassodilators, nothing. He will not do an ultrasound or any other test.

UMMC sent me labs to have done, which I had done today. 22 tubes of blood. The guy at the lab said "oh my god!!!" when he saw the tests requested. The two young guys at the lab care more about my health than my own local doctors do. (We had lots of time to chat while drawing 22 tubes) ;)

So my only hope now is my group of long distance doctors in Maryland. Thanks all for allowing me to vent.

WW340 Rookie
WW340
Posted

Good luck. I have no answers or suggestions, but I wish you the best on your journey. Sometimes this celiac disease is just the tip of the iceburg. I have many medical mysteries yet to be solved. I am finally feeling much better, but it seems that things just keep surfacing.

Keep us posted.

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ravenwoodglass Mentor
ravenwoodglass
Posted
went to the nephro today. I left the office and sat in my car and cried until my head ached. He said on that yes I do have some kidney function issues (which he never mentioned before) my kidneys are not causing the edema, neuropathy and blurry vision (all of which are symptoms of kidney disease on the Kidney Foundation website. He said that if my kidneys were casuing this problem, I would also have high BP and diabetes. Then he insinuated that I had just gained some weight, because the edema I have is interstitial and not pitting edema. I asked him to explain to me how I could have gained 35 pounds in one day. He had no answer. Even though my labs show chronic kidney issues he will not treat it. No diuretics, no ace inhibitors, no vassodilators, nothing. He will not do an ultrasound or any other test.

UMMC sent me labs to have done, which I had done today. 22 tubes of blood. The guy at the lab said "oh my god!!!" when he saw the tests requested. The two young guys at the lab care more about my health than my own local doctors do. (We had lots of time to chat while drawing 22 tubes) ;)

So my only hope now is my group of long distance doctors in Maryland. Thanks all for allowing me to vent.

That doctor sounds like a real jerk. I am glad UMMC is helping you and I hope they are able to figure it out. If I were you I would get full copies of my records from the neph you just saw and look for another one. Perhaps UMMC might know of one in your area that they have worked with before.

mushroom Proficient
mushroom
Posted

Well, at least your bloodwork may give the other doctors some clues. I seem to recall in our discussion that you are hypothryoid. I am sure you have probably come across this yourself, but I found it very interesting...

"Open Original Shared Link

EDEMA OF THE EXTREMITIES: Excerpt from Differential Diagnosis in Primary Care

Nonpitting edema of the lower extremities will usually be due to lymphatic obstruction but hypothyroidism can be ruled out with a free T4 assay or TSH."

I did not know there was a relationship between hypothyroidism and interstitial edema. I have just started Tx for hypothyroidism too. Makes one wonder?????

We have a tendency once diagnosed as celiac to blame everything on it, which is not always the case, but sometimes it can be...???

My MIL had MS and husband is celiac. Every problem MIL had, including her C and D, was blamed on MS by her doctors--"Oh, it's just her MS", but perhaps she really was undiagnosed celiac????

Many more questions than I have answers to. :(

jerseyangel Proficient
jerseyangel
Posted

I'm so sorry about your narrow minded doctor--thankfully you have the "long-distance" team working with you. I wish you much luck with everything--please keep us posted :)

Wolicki Enthusiast
Wolicki
Posted
  • Author

UPDATE

My doctors from afar ran a huge series of tests: 22 tubes! The lab guys said "OH MY GOD!" It was sort of funny, acutally :rolleyes: The good news: my kidneys are recovering! YAY! They're not sure why, but think it was a nutritional deficiency of some sort, and now that I am absorbing what I am eating, they're on the road to recovery! I am just hoping the edema will subside now.

They tested everything imaginable. Most of the vitamin levels are not back yet, but they learned that the long term malnutrtion did not effect my heart or liver- they're both strong as can be. I do have signs of some sort of metabolic bone disorder, but it is very reversible with vitamins. Even though my B12 and D are within normal limits, they're not high enough for them (these are real doctors who want my levels to be better than the low limits of normal! Can you believe it??) So I will be taking supplements of B12 and D and iron.

Knowing that there is nothing seriously wrong with me, now 4 months after dx, is very comforting. I am still very frustrated that none of my normal doctors were willing to check anything after being sick for so long. Thank God for UMMC! I am interestd to see what all my other vitamins and minerals are doing, but I should know by Tuesday.

I am wondering now if my thyroid will right itself too. My TSH was normal in February, then after dx it was up over 5. I will keep you all posted. My main goal right now is getting rid of this edema! Wish me luck!

Janie

Ahorsesoul Enthusiast
Ahorsesoul
Posted

Janie,

I am so glad you are getting better! Your story will encourage and help others! tfs

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    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after  eating them.  If it happens a few times after eating the same foods- I cut back or avoid them. for this reason I avoid dairy and eggs.  So far this has worked well for me.  oh, I have some of Bob's Red Mill Mighty Tasty Hot cereal and I love it! it's hard to find but I will be looking for more.  for the next few weeks I'm going to be concentrating on whole fresh fruits and veggies and beans and nuts and seeds. I'll have to find out if grains are truly necessary in our diet. I buy brown rice pasta but only eat that maybe once a month at most. Never liked quinoa. And all the other exotic sounding grains seem to be time consuming to prepare. Something to look at later. I love beans and to me they provide the heft and calories that make me feel full for a lot longer than a big bowl of broccoli or other veggies. I can't even tolerate the plant milks right now.  I have reached out to the endo for guidance regarding calcium intake - she wants me to consume 1000mgs from food daily and I'm not able to get to more than 600mgs right now.  not supposed to use a supplement until after my next round of testing for hyperparathyroidism.   thanks again- you seem to know quite a bit about celiac.  
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    • SilkieFairy
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    • catnapt
      anyone here diagnosed with a PARAthyroid disorder? (NOT the thyroid) the calcium controlling glands

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