Please help, mass in the abdomen

[knitty kitty]

How are you doing, @Ruby89?

Have you been back to the doctor?  I found it curious your doctor mentioned Gilbert's syndrome.  

Have you been checked for nutritional deficiencies beyond B12 and Vitamin D?  

Folate deficiency can cause peripheral neuropathy and high bilirubin.  

Part of proper follow up care for Celiac people is testing for nutritional deficiencies.  

Are you supplementing with a B Complex?  You may have the MTHFR genetic mutation and would respond to Methylfolate.  

Hope things are better for you!

 

[MADMOM]

On 9/19/2023 at 10:42 PM, Ruby89 said:

Hi, I am new, and my English is not that good, so I apologize in advance for that but I hope that you can understand. I’m 34 yr old, new mom, currently breastfeeding, very skinny and loosing weight. 

I was diagnosed with celiac August 1, blood test and biopsy. I’ve been on GFD since. 
Yesterday I was taking a shower and massaging my abdomen, so I noticed sausage like shape mass/lump(almost like you feel a bowel horizontally ) above my belly button, and when laying down gas get stuck there and is actually like a bulge until pass that spot. Almost all night I read about the lymphoma on the small intestine ( not good idea I know). But what worries me the most now is that I also found another spot next to the belly button on the right side of abdomen that is also oval shape and very big. Not painful. Is not easy palpable when laying down but everyone could feel it when I’m standing. In panic today I went in a walk-in clinic and the doctor just confirmed the same, ordered CBC blood work( results tomorrow) and send me for ultrasound. I found one place that was able to see me today and the technician said that she couldn’t see tumor or hernia but also said that Lymphoma is not visible on the bowels on the ultrasounds. Results in two days. I got home, with slightly increased temperature (37.5, another symptom of lymphoma), maybe from anxiety, but I just noticed that the temperature is now good but start sweating. Also I suffer from severe anxiety and depression ( not treated for years), but this is unbearable now. I don’t know what to do, gonna try to call gastroenterologist tomorrow, but she won’t see me soon. I can’t have CT scan because of breastfeeding, I have MRI appointment coming in November for cyst on my pancreas, but that’s too far. I’m so scared, I can stop crying.  And I’m so sorry for the long post. 
I know no one can diagnose but does anyone had similar experience? I can’t stop crying. Any advice would help.

any update on your test results?  i just read your post and am concerned 

[knitty kitty]

@Ruby89

How are you doing?  

How much Thiamine are you taking?  You can increase the amount of Thiamine you take.  I took about 1000 mg of Thiamine throughout the day.  I took smaller doses 300-500 mg every three to four hours.  Magnesium helps Thiamine work properly, so adding a magnesium glycinate or citrate supplement will help as well.

Hope things are going better for you.

[Ruby89]

Hello everyone,
I’m sorry for the lack of response. I waited for my MRI scan and wanted to update you on the results.

MRI with contrast did not find anything abnormal on my abdomen accept couple of benign cyst on my liver and kidneys, and 5 mm cyst on the tail of my pancreas, possibly IPMN (precarious neoplasm) with no dilated duct and no enhancement. 
my specialist recommended follow up MRI scan in one year, because of the size. I have to admit that I’m pretty scared, especially after hearing the word “precancerous “, but there is nothing that I can do right now. She said that my jaundice is not connected to the pancreas problem, and that i definitely have Gilbert Syndrome ( which is weird to me, considering that I had my bilirubin level checked many times throughout my life and was never elevated). 
Anyway, they did not see any mass on my abdomen, so dr is assuming that the mass might be some muscle or organ that is palpable because I’m very skinny. 

So now I’m still a little bit yellow, I don’t have abdominal pain, but still have issues with my BM , not sure if it’s still from celiac or form the pancreas.

The other new thing is that I’m being referred to a rheumatologist, because after the peripheral neuropathy, which is completely gone ( thank you @knitty kitty , I think the thiamine really helped) now I have joint pain, all over my body, with low grade fever. I hope it’s not Rheumatoid arthritis 🤞

I read all of your suggestions, and  I really appreciate the responses and the great advises. And @Wheatwacked, yes you are right about the bilirubin and chlorine supplements. I will get it as soon as possible. I start drinking tea called gentian root. It helped a little bit with the yellow tone and a lot with my digestion. No acid reflux anymore and no pain after eating. I really noticed that this tea helped me a lot. 

@cristiana, I couldn’t go for private MRI, because In Ontario, Canada where I live is not allowed. I was thinking to go in the US but after all, decided to wait, and it was long waiting, with a lot a worrying and creating all kinds of scary scenarios, which affected me and my entire family. Everyone were so worried, and my baby , she could feel it as well, as I wasn’t spending much time with her. ( I already regret everything) And you are completely right, this time that I have is precious, but my health anxiety sometimes really gets me and I really had some dark days. I did have diastasis recti. That might be the mass as well but, but can the separation be only on one side, not in the middle of the abdomen?

So for now, some good news and some not that good but I’m gonna have to deal with it and try to focus on positive things and control my thoughts until my next MRI scan next year. 
I really appreciate all your help. Means so much to me.

Thank you 🤗❤️

[trents]

4 minutes ago, Ruby89 said:

 

And @Wheatwacked, yes you are right about the bilirubin and chlorine supplements. I will get it as soon as possible.  

 

I hope you mean "choline" instead of "chlorine". You certainly don't want to ingest chorine.

7 minutes ago, Ruby89 said:

 

now I have joint pain, all over my body, with low grade fever. I hope it’s not Rheumatoid arthritis 🤞

🤗❤️

Have you considered lyme disease?

[Ruby89]

Just now, trents said:

I hope you mean "choline" instead of "chlorine". You certainly don't want to ingest chorine.

Lol. It’s late here in Canada. Yes I meant choline. 

[Wheatwacked]

The choline will help with the bile problem, the BM problem and the Gilberts syndrome.  Also, energy, brain fog.

9 hours ago, Ruby89 said:

I really had some dark days.

9 hours ago, trents said:

I hope it’s not Rheumatoid arthritis 🤞

The scary thing about Celiac Disease is that between the autoimmune response and the ensuing vitamin and mineral deficiency it can mimic some 200 or more other symptoms.  The medical professionals look for diseases that have pharmocologic or surgical cures, not nutrition.

With the gluten free diet and the right vitamins even the "arthritis" will go away.

Increasing your vitamin D intake will help with the dark days and possibly the arthritis.  I've read that up to 70% of certain areas in Canada have low D.  I keep my 25 hydroxy vitamin D blood level around 200 nmol/L by taking 10,000 IU a day.  I was in so much arthritis and fibromyalgia pain I could not stand for more than 10 minutes and spent 22 hours a day in bed. Pain free now, while I listen to family and friends complain about it.  They are in denial.

To speed up your recovery consider upping your intake of iodine.  A mong a host of other functions in the body, iodine works under the direction of vitamin D to kill off any old or defective cells allowing new ones to repair damage.

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Conditions that can be remedied by iodine supplementation are: ADD, ADD/ADHD, breast disease, overgrowth of yeast, excess mucous production, fatigue, fibrocystic breasts, headaches, migraine headaches, hypertension, liver disease, ovarian disease, carotid duct stones, prostate disorders, thyroid disorders, vaginal infections, and many more common ailments.  Iodine Insufficiency in America: The Neglected Pandemic

 

[knitty kitty]

@Ruby89, 

So good to hear from you!  I'm so glad the thiamine helped improve your neuropathy! 

Are you taking a magnesium supplement?  Low Magnesium is associated with joint pain and increased levels of anxiety and depression.  Thiamine needs Magnesium to make important enzymes.  Magnesium threonate is exceptionally beneficial with the anxiety.  Magnesium Glycinate is very gentle on the digestive system and will improve bowel movements.  I take both forms.  

Are you taking a B Complex vitamin supplement?  Checking for nutritional deficiencies should occur before starting supplementation of vitamins and minerals.  Otherwise you'll get inaccurate measures in blood tests.

Thiamine is just one of eight essential B vitamins that all work together.  They are essential because our bodies cannot make them so we must get them from foods or supplementation.  Another B vitamin, Pyridoxine B6, works with magnesium to reduce anxiety better than just magnesium alone.   Thiamine and Niacin B 3 help make and secrete digestive enzymes, enzymes from the gallbladder and enzymes from the pancreas.  

Do keep supplementing with Thiamine.  High Dose Thiamine helps us fight cancer.   The pancreas uses lots of Thiamine, second only to the brain.  Thiamine is needed in cell DNA replication.  Without sufficient Thiamine, cells can mutate into precancerous or cancerous cells.  Thiamine helps kill off the sick cells.  

Gilbert's syndrome can be triggered by pregnancy.  It may go into remission.  

Diastasis recti is helped by some of the fat soluble vitamins (Vitamins A, D, E, and K).  Vitamin D helps lower inflammation. Vitamins A and E, along with Vitamin C and Omega Threes, help build collagen needed to repair the abdominal muscles.  

I found Bengkung Belly Binding very helpful after pregnancy.  Yes, it can occur on one side only, depending on how the baby was laying in utero.  I even do belly binding after a glutening because I can bloat so badly.  There are many videos on YouTube about how to do Bengkung Belly Binding and how to make your own binding.  Sounds strange, but it's really very helpful.  

 I'm so glad you are improving!  Keep us posted on your progress!

References:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7761127/

https://pubmed.ncbi.nlm.nih.gov/34023805/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6298677/

Anticancer effects of Thiamine references...

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2711754/

https://www.sciencedirect.com/science/article/pii/S0753332219352709

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3963161/

[Ruby89]

Hi everyone,

I hope you all had wonderful holidays.

So a I have some updates on my situation, and hope for some advice if anyone had similar experience. I’m not sure if I should start a new topic, but all of you here were really helpful and knowledgeable, so you might give me some advice or tips before I go for my appointment with a rheumatologist in 2 weeks.

So my joint pain continued, which I have to admit is not severe, is more like aching and it goes away in few seconds. Hip pain when moving, but then I also developed redness across my nose and cheeks. I read a lot, looks like butterfly rash, it’s more red when I bend over, when I’m stressed, or drink alcohol. And it doesn’t separate from my nostrils folds. But when I go out in cold it kind a disappears, and no other sun sensitivity ( but I haven’t really been exposed, because it’s always cloudy). My GP tested me for ANA, DsDna and Rheumatoid Factor. The results said Negative Ana at 1:80 titter ( but my GP said that that’s positive). and positive dsDNA at 6 ( references are <5 negative, 5-10 intermediate, and >10 positive). RF negative. So she called me and said I have lupus and referred me to a rheumatologist. All the inflammatory markers and blood test were normal. 

Im so scared and now that I now and read more about Lupus, I connect some symptoms that I had, maybe my mind is contributing to that ( because I’m also hypochondriac), I urinate more often, I have dark urine, pain in muscles. 
I will know more in two weeks, and in a meantime I’m taking Chinese herbs from one very good TC doctor who helped me before with different things, I’m taking MSM for joints and anti inflammatory diet, and bunch of other supplements. 

 I don’t know how to deal with everything that is happening and I know that my stress contributed to all of that is happening to me. 
 Anti DsDNA are pretty specific for Lupus but mine are just little above normal. The other thing is that I’m very opposed to medication, and I’m terrified from I thought that I might have to take pills for the rest of my life 😞. 

Any thoughts, can this be something else, can Celiac for example cause positive DsDna and the symptoms? Should I get treatment if offered or should I go for second opinion?
Im sorry for the long post again. 

Thanks.

[trents]

Lupus and celiac disease are both autoimmune conditions and when you have one autoimmune condition you tend to develop others over time. Why are you opposed to taking medications?

[cristiana]

@Ruby89

Hello Ruby

It is good to hear from you again. Thank you so much for the update.

For many it takes a while to unpick what is a coeliac symptom, what might be another condition, or what might be a 'hangover' from damage (some of which will be reversible) caused by deficiencies.  So what I'm saying here is that if you do have lupus (and actually, I think it would be worth starting another thread as it could catch the eye of other people with the condition who can help) you may find that as you heal from coeliac disease some of the symptoms you describe, such as joint pain, might greatly improve.  In the early years following my diagnosis I had a lot of joint pain and it is so much better now.  🙂

Re: the issue of having to take meds.  If that is the case, perhaps try to think of things another way.  If your meds will allow you to feel better, and help you live a good long life, think how wonderful a thing that is.  We are incredibly blessed to live in an era when we have all of this to help us.  And don't forget, either, that cures and improved treatments are being found for various conditions all the time.

In the meantime, try not to spend too much time fretting and consulting Dr Google.  (I'm a fine one to talk, if there were an Olympic medal for this I'd have a gold one.  Whilst it's good to be informed, looking back I can't have the time back I used to spend fretting and googling -  I wish I had spent less time worrying and more time living my life!)   

Also, speaking from experience, stress only adds to pain and it never made anyone's health better - as far as I am aware!  So try to find ways to step away from that stress/pain cycle - an absorbing hobby, visiting an elderly neighbour for a chat, going out for a lovely walk in the countryside etc. 

And do start that new thread, and keep coming back to us if you have any questions.  We are here for you.  

Hugs.

Cristiana

Edited January 10, 2024 by cristiana

[Wheatwacked]

Read this whole article Vitamin D in Lupus. It may make you feel better.

Have you been tested for vitamin D?  That is the key to our immune system.  Normal is around 200 nmol/L (80 ng/ml).  Lupus causes malabsorption of vitamin D so it takes higher dosing, especially if you have the butterfly rash so you avoid sun.  

It seems that barring sunlight as a source, it takes 250 mcg (10,000 IU a day to maintain 200 nmol/L.  I have been taking 10,000 IU vitamin D3 daily since 2015, it has had a very positive effect on my mental and physical recovery.  Vitamin D Is Not as Toxic as Was Once Thought

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Vitamin D in Lupus  Overall, 67% of the subjects were vitamin D insufficient, with deficiency significantly more likely in patients with renal disease or photosensitivity, or both, adjusting for race, season, age, and smoking... Multiple studies since have confirmed that the majority of patients with SLE have insufficient levels of 25(OH)D, even if taking vitamin D supplementation,9 although the average supplement dose remains only 400 IU to 800 IU daily. One report found anti-vitamin D antibodies in 4% of patients with SLE, possibly contributing to vitamin D clearance... many experts would recommend correcting vitamin D deficiency with 50,000 IU capsule of vitamin D2 weekly for 8 weeks, followed by either 50,000 IU of vitamin D2 every 2 to 4 weeks