Docs can't seem to figure me out - wondering if anyone has had similar experiences

[LaurainAZ]

20 hours ago, ravenwoodglass said:

Are the doctors sure it is shingles? The skin form of celiac, DH, is a painful burning insanely itchy rash. I have DH and it was misdiagnosed as various things from poison ivy to pickers acne to atopic dermatitis.  Didn't know it was DH till after I was diagnosed celiac and the lesions went away leaving behind their distinctive purple scars.  If it is shingles I do so feel for you as I had it recently and it is incredibly painful but not as itchy as DH.  Dh also will usually present bilaterally. If you have the rash on one arm it will be in the same place on the other, for example.

That's really interesting - I had shingles once when I went through an incredibly stressful period in my life. This was a year before I knew I had Celiac. I guess since I started getting them recurrently a few years later (also in Dec. 2014 is when it started up again, around the same time as all this other stuff, and I should mention that was also a nightmarishly stressful time in my life as well). But maybe you're right - it's possible it was never shingles, though the antivirals do seem to help. Sometimes I just get the pain with no rash, sometimes I get the rash with the pain - I guess that's a characteristic of shingles, not sure. it's always on my stomach, and sometimes around the flank into my back, and then I almost always just have itchy skin all over with little tiny hard to see bumps that are sometimes skin colored and sometimes red. The docs never know what it is and just give me a cream. But I'm almost always itchy. Is this what the DH is like?

[Victoria5289]

On 5/14/2017 at 8:08 PM, LaurainAZ said:

Hi everyone,

I was diagnosed with Celiac Disease several years ago in 2012 (though I've had several doctors go back and forth, some say it's Celiac, some say its a gluten sensitivity - regardless when I eat it I often get so sick I'm bedridden for a few days and I get skin rashes and joint pain). I also had thyroid disease and thyroid cancer, and had my thyroid removed in early 2013 and was also diagnosed with PCOS around the same time. At first I started to get better after going gluten free and then having my thyroid removed and going on Synthroid to replace the hormones. But in late 2014 and early 2015 I suddenly became really ill with GI symptoms and this persists until now, almost 3 years later. The weird thing is this all started with the first menstrual cycle I had had in 5 yrs (I suddenly had a period without having any for 5 years THE DAY BEFORE all this started - TMI, sorry for that, but I think that it's related, though most docs don't seem to think it's significant.)

It started in Dec. 2014-  I was having intense abdominal pain and frequent (frequent is an understatement) diarrhea (again, TMI, I know), and even had pain in my upper abdomen as well as my lower. I also had joint pain, some shortness of breath and pain in my back as well.  After a couple of weeks it suddenly got so bad and I was so dehydrated I was hospitalized even though they couldn't tell me what the cause was - the best they had was that it was some sort of infectious colitis. The pain was so intense that I thought I might have even had a kidney stone. After this, I started getting sick when I ate almost anything in general, even if it didn't have gluten in it, and I had to go to the hospital a few more times for the same reason. Most of the time I was told it was just gastroenteritis (even though I was so dehydrated my lips were gray and I couldn't walk, and I'm pretty sure that no one gets gastroenteritis about every 2-3 months, which is how often I was ending up in the ER), and if they didn't tell me it was gastroenteritis I was told it was IBS.

I've had all the tests done, stool sample, colonoscopy, 2 endoscopies, CT Scans, pelvic ultrasounds, everything - and they never find anything significant. However, The IBS diagnosis doesn't sit right with me - I feel inflamed and have dangerously low levels of vitamin D which is a marker of inflammation, and I've had other autoimmune disorders - in fact autoimmunity runs in my family. So far all they've  found is "mild inactive gastritis. I also got diagnosed with diverticulosis, but they said it wasn't infected to become diverticulitis, so it still didn't give me answers. Since then I've been trying to get answers, but all anyone ever tells me is that I have IBS. - I should probably add after all the GI ER visits I had I also started having alot of issues with kidney pain and was diagnosed with a kidney infection once, though I'm pretty sure I've had that at least twice.

Right now my symptoms are:

• that I'm frequently nauseated for most of the day, and I often avoid eating.
• Diarrhea
• Extreme fatigue
• Abdominal pain
• Sometimes I still get the kidney pain
• Constant Pelvic pain
• Joint pain
• Lomotil is the only medication to give me any relief, and it's basically just prescription strength Immodium - it doesn't always work, but a lot of the time it does. I have abdominal pain all the time, usually sharp and stabbing or dull and achy. 

Since things aren't showing up on tests it starts to feel like maybe you're crazy - but it most definitely is happening to me and has been for years now. Can anyone else identify with this situation? 

Um this sounds like a small tumor motive detected its to grow more having the same symptoms have fibroid tumor nearly frontal vertex 

[kareng]

1 hour ago, Victoria5289 said:

Um this sounds like a small tumor motive detected its to grow more having the same symptoms have fibroid tumor nearly frontal vertex 

Huh?  Not sure what you are trying to say .  It's not making sense.

[Victoria1234]

2 hours ago, kareng said:

Huh?  Not sure what you are trying to say .  It's not making sense.

This person joined today and posted over 20 replies, making medical claims that are rather nonsensical.... cycling lady might have it right that she's using a poor translation program.

[kareng]

2 minutes ago, Victoria1234 said:

This person joined today and posted over 20 replies, making medical claims that are rather nonsensical.... cycling lady might have it right that she's using a poor translation program.

I think I said that....  

[Victoria1234]

3 minutes ago, kareng said:

I think I said that....  

Sorry Karen, I think you did. Sorry!

[plumbago]

Hi,

If I can, some questions:

What medications do you take currently?

I’m seeing frequent infections, serious stomach issues, PCOS, not eating the best, and then insulin resistance. Has a doctor given you a diagnosis of diabetes? When was the last time you had an A1C test? What was it? Do you take meds for high glucose? Gastroperesis is a complication of diabetes that results from damage to the vagus nerve which controls the muscles of the stomach. Slow or stopping movement in stomach. Symptoms are feeling of fullness after eating a small amount of food. Delayed gastric emptying. Signs – normal blood glucose right after eating but then a sudden spike.

I haven’t heard of urinary reactions to depo, but as it’d been a while since I last took a look at the insert, I decided to do so again, and see there is an increase in GU tract infections. However, you had one injection which lasts 90 days only. Maybe that’s not so much a factor anymore?

Personally, I’d opt for the B12 shots over any oral form.

As far as diagnosing endom. – I thought it was a two-step process involving an U/S scan and the doctor does something slightly invasive too. Usually the two are done together.

 

Let us know if we can help!

 

Plumbago

[LaurainAZ]

17 hours ago, plumbago said:

Hi,

If I can, some questions:

What medications do you take currently?

I’m seeing frequent infections, serious stomach issues, PCOS, not eating the best, and then insulin resistance. Has a doctor given you a diagnosis of diabetes? When was the last time you had an A1C test? What was it? Do you take meds for high glucose? Gastroperesis is a complication of diabetes that results from damage to the vagus nerve which controls the muscles of the stomach. Slow or stopping movement in stomach. Symptoms are feeling of fullness after eating a small amount of food. Delayed gastric emptying. Signs – normal blood glucose right after eating but then a sudden spike.

I haven’t heard of urinary reactions to depo, but as it’d been a while since I last took a look at the insert, I decided to do so again, and see there is an increase in GU tract infections. However, you had one injection which lasts 90 days only. Maybe that’s not so much a factor anymore?

Personally, I’d opt for the B12 shots over any oral form.

As far as diagnosing endom. – I thought it was a two-step process involving an U/S scan and the doctor does something slightly invasive too. Usually the two are done together.

 

Let us know if we can help!

 

Plumbago

Hi Plumbago,

I currently take Lomotil, Zantac, Clariton, Synthroid/Levothyroxine, Lexapro because I was experiencing a lot of anxiety and stress (as you can imagine), and prescription strength Vitamin D once a week - it's like a 50000 unit blast once a week. I also have a Trammadol prescription for when the pain gets really bad, but that's on an as needed basis. 

They just did fasting blood work on me about 6 weeks ago that showed that I wasn't diabetic - but it's interesting that you mention the Vagus nerve, because they actually accidentally "knicked" mine during my Thyroid surgery and it caused me to lose my voice for 3-4 months. (Whatever "knicked" means - I'm not sure the extent of the damage- I was told my thyroid had gotten so large that the nerve was kind of wrapped up around it and they had no choice but to move it out of the way. They said any stimulus or touching of the Vagus Nerve causes it to spasm and it takes a long time for it to calm down.)

I'm currently not on anything like metaformin for the insulin resistance because I already have so many stomach issues that they didn't want to make them worse. 

Thanks everyone for all your help so far - this support has been amazing!

[frieze]

is that vit D the little green footballs? if so, don't count on much help.  that is vit D2, and you need vit D3

[plumbago]

On 5/19/2017 at 0:08 PM, frieze said:

is that vit D the little green footballs? if so, don't count on much help.  that is vit D2, and you need vit D3

Say -- so what happened here? I know so many people myself included who for months if not years thought they were getting D3 when in fact they were getting D2. In my case, a pharmacist is the one who set me right - I was picking up my latest monthly prescription and noticed the pills were not my usual green gel caps but now white capsules. Not sure if the mistake was made on the doctor's end or the pharmacy's. Weird.

[LaurainAZ]

6 hours ago, plumbago said:

Say -- so what happened here? I know so many people myself included who for months if not years thought they were getting D3 when in fact they were getting D2. In my case, a pharmacist is the one who set me right - I was picking up my latest monthly prescription and noticed the pills were not my usual green gel caps but now white capsules. Not sure if the mistake was made on the doctor's end or the pharmacy's. Weird.

Yep I have the D2 little green footballs! Wow! Okay well that's on my list to discuss with the doc when I go back next week. What's the difference between D2 and D3?

[plumbago]

26 minutes ago, LaurainAZ said:

Yep I have the D2 little green footballs! Wow! Okay well that's on my list to discuss with the doc when I go back next week. What's the difference between D2 and D3?

I'm not an expert, but from what I've heard and read, D2 is derived from plants. And D3 (cholecalciferol) is more potent than D2.

"Research shows vitamin D3 is approximately 87 percent more potent in raising and maintaining vitamin D concentrations and produces 2- to 3-fold greater storage of vitamin D than does D2. D3 is also converted into its active form 500 percent faster"

Open Original Shared Link

    Ergocalciferol (vitamin D2)
    Cholecalciferol (vitamin D3)

 

 

[BlondeGoddess]

You sound like me...  I was diagnosed with leaky got due to a severe gluten exposure that caused some pretty terrible internal bleeding for 6 weeks and now I react to everything I eat the last couple years... they said the gut lining created like holes that leaks everything I eat into the bloodstream and the body thinks it's foreign and creates a false allergy. My iGGs are everything except meat and seaweed salt basically. I started taking supplements to rebuild my gut and get in my nutrients (a few are Stress B, Anti Histamine, Tumeric, probiotics, etc) and I try to avoid any reactors but it's hard when I travel so much, I live mostly on dried seaweed, potatoes and canned chicken (natural kind). I am thinking about doing a round of stem cell soon on my gut using PRP mixed with my Bone marrow because I work in the medical area with some docs that do it and my research is actually quite amazing in this area. For years the doctor always found that I had a high SNA tests for an auto immune disease but they didn't believe even with celiac gene that it could cause the high ANA and they had already ruled out things like lime disease, lupus,  etc. I honestly believe it's the celiacs that is my biggest auto immune complication, but people have mixed opinions in that

[Really]

Oh. Please get a referral to a large teaching hospital. The specialists there will give you answers.  Take care.

[BlondeGoddess]

5 hours ago, Really said:

Oh. Please get a referral to a large teaching hospital. The specialists there will give you answers.  Take care.

If you're like me, you've already tried all multiple options without very good answers, thus the reason you are on the boards...

[knitty kitty]

14 hours ago, temp77876 said:

You sound like me...  I was diagnosed with leaky got due to a severe gluten exposure that caused some pretty terrible internal bleeding for 6 weeks and now I react to everything I eat the last couple years... they said the gut lining created like holes that leaks everything I eat into the bloodstream and the body thinks it's foreign and creates a false allergy. My iGGs are everything except meat and seaweed salt basically. I started taking supplements to rebuild my gut and get in my nutrients (a few are Stress B, Anti Histamine, Tumeric, probiotics, etc) and I try to avoid any reactors but it's hard when I travel so much, I live mostly on dried seaweed, potatoes and canned chicken (natural kind). I am thinking about doing a round of stem cell soon on my gut using PRP mixed with my Bone marrow because I work in the medical area with some docs that do it and my research is actually quite amazing in this area. For years the doctor always found that I had a high SNA tests for an auto immune disease but they didn't believe even with celiac gene that it could cause the high ANA and they had already ruled out things like lime disease, lupus,  etc. I honestly believe it's the celiacs that is my biggest auto immune complication, but people have mixed opinions in that

Have you tried keeping a food journal?  If you do, you might be able to spot problematic foods.  

One problematic food might be those potatoes.  They are in the nightshade family along with peppers, tomatoes, and eggplant.  Nightshade vegetables contain alkaloids that can be the cause of digestive problems.  

After going gluten free, I ate a lot of potatoes and continued having digestive problems.  I cut out nightshade vegetables and had almost immediate improvement.  

The alkaloids in potatoes contribute to leaky gut and inflammation.  Here's a scientific study done with mice:

Open Original Shared Link

Here's another article:

Open Original Shared Link

 

Hope this helps!

[BlondeGoddess]

I do regular blood panels for my IgG and Ige reactions,  almost everything comes out to at least a three reactor or higher out of five.  The weird thing is foods that are used to react to a couple years ago, I no longer react to so avoidance definitely can heal the gut at least temporarily in my case which gives hope. Also the supplements I have come from both MD and ND docs after they jointly studied my habits and did a mix of extensive tests and I do feel they help but it's frustrating to feel like  you are constantly swollen and having Inflammation due the food reactions.  Any given day I could go up 10 or 12 pounds and swelling, if I have a reaction to something that I eat  and the difficult part is that during the testing I realize that they can also test for delayed reactions which could take several days before you notice a reaction from some types of foods on the IgG and IgE panels.  That's why I responded to the post, I saw someone else frustrated with a similar concern and  I have a medical background and it's tough even for me at times to find a new direction to try, that's why am constantly doing research on additional options and at this point one of the ways I'm leaning towards is to try stem cell next based upon my research of studies done on celiac disease patients.  I find it interesting that all of the celiac patients have all of these other food allergies, and I'm under the belief that having such a break down in immunity based upon the celiac's could possibly lead to false reactions in other foods until we can find a way to heal her guts (difficult in a society where  many people are uneducated about what gluten even is or they  feel that gluten-free is just a fad for everyone and many people still don't understand that for some of us it's a medical necessity!).

[LaurainAZ]

On 5/23/2017 at 5:35 PM, BlondeGoddess said:

If you're like me, you've already tried all multiple options without very good answers, thus the reason you are on the boards...

Yes, unfortunately that's the case.  However, I'm going to the Mayo Clinic in Arizona now and for the first time in a long time, I'm making progress. I've only had a few of my appointments (they set me up with a bunch), so they're still figuring things out, but they made some medication switches that have been helpful and on Friday they're going to check my gluten levels among other things. I'll let you guys know what I find out, maybe it will help someone else on here, too.