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Celiac Disease And Lymphoma


stellar

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stellar Newbie

I have been having pain in my left groin and armpit, and a low grade fever/night sweats off and on. I am paranoid because I recently read an article about how Celiacs have an increased risk of developing lymphoma. I had a CT scan last week of my pelvic area and they "didn't find anything significant", but that was coming from the medical assistant since the doctor was out over the holidays. Also, not sure they can diagnose lymphoma by a CT scan anyway. At the onset of my symptoms I was told I had a slightly elevated white blood cell count... probably due to stress they said. But the same doctor sent me to therapy because they couldn't find anything wrong with me and thought I had generalized anxiety disorder :rolleyes: . Has anyone else had these symptoms or heard of the connection between the 2 diseases (celiac and lymphoma?)


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dilettantesteph Collaborator

There is a link. My mother died of lymphomia at 47, and I didn't figure out I had celiac till I was 48, so I freak out too. In her case she went to doctors for years with lymph problems. They kept telling her it was just a viral infection when they were probably missing signs of early lymphomia. I don't know if it can be easily diagnosed early or not. Once a doctor told me it could be with a blood test and tested me, but I think he was lying to put my mind at ease. Her early symptoms were swollen lymph nodes which are present in any infection so it was easily missed. I suggest you be insistent and ask lots of questions. Good luck. Hopefully it is just an infection.

Mother of Jibril Enthusiast

There is a connection between celiac disease and lymphoma:

https://www.celiac.com/articles/1007/1/Celi...homa/Page1.html

Sjogren's Syndrome (an autoimmune disorder that clusters with celiac) also increases your risk of lymphoma. I've been reading about this lately because I've had a painless, swollen lymph node in my neck for more than two months... I have an appointment with an ENT on Tuesday. I'm hopeful that it's just an infection. I have good reasons to think that it is just an infection, but I'm also a bit worried because my platelets have been dropping lately.

There is a LOT of scary stuff on the Internet :( I think it's important to keep in mind that the symptoms of lymphoma can be caused by other things. For example...

Night sweats: could be a hormonal imbalance (early menopause)

Elevated WBC: bacterial infection

Low grade fever: lupus (which can also cause enlarged lymph nodes)

Enlarged lymph nodes: benign tumor, infection

Falling platelets: ITP (but you have to rule out scary stuff like lymphoma and leukemia)

I think you're smart not to assume this is just "stress." Try not to panic. :ph34r: (I'm telling myself this too). Lymphoma really is a rare disorder.

jerseyangel Proficient

My gastroenterologist told me that there was an increased risk of intestinal lymphoma with Celiac Disease. The test to ask for would be an Upper GI.

ravenwoodglass Mentor

There is an increased risk when we have not been diagnosed. One thing to help ease your mind a bit is that that risk drops for every year that you are gluten free. After I think it is 5 years with the gluten issues under control the risk is very close to the regular populations. They can biopsy the glands if needed to tell if lymphoma is present if the blood tests and other clinical signs point to it. Also once glands get swollen it can take a long time for them to go down. When I had active DH my glands in my neck and groin were always swollen and they were that way for many years. It took about a year for them to reduce. Try not to stress out too much about the risk but do be sure to get things checked.

YoloGx Rookie

I agree--don't freak out. Do have it checked further.

But for the time being also consider natural remedies to turn things around like taking detox herbs for the liver, intestines and lymphs. That means dandelion or milk thistle (dandelion etc. for the liver--best to alternate these, one week on and then use the other herb the next, similar to the next "or's" I 'll list ahead), yellow dock or Oregon Grape Root (systemically good plus excellent for the intestines and helps out with the liver; both also have antimicrobial characteristics); and echinacea or cleavers (cleavers is the best lymphatic drain around; you might want to start with echinacea since its more gentle). Eating lots of parsley, broccoli and cabbage etc and other greens is excellent (necessary) too.

Barberry root taken now and then for a few days is excellent against both yeast and generalized microbial infections like in the lymphs. Oregano oil caps and enterically coated garlic are good too for this last. Oregano and garlic usually can be taken more regularly than the barberry.

Marshmallow root and slippery elm caps will help soothe and heal the villi, which may be the initial culprit in this matter.

Plus sauna, bentonite mud (Indian healing clay etc.) packs on hands and feet made mixed with a little apple cider vinegar in the water helps too.

And plenty of water...no alcohol and very little if any sugar. Use stevia as a sweetner whenever possible. NO artificial sweetners.

Also use digestive enzymes such as pancreatin and bromelain/papain, B complex, Vit. D and A preferably from fish oil.

Exercise regularly! Walk...! Etc. Work up a sweat daily!

Hope this helps! You don't have to be a passive victim and just wait for what may or may not happen. All the above is good for anyone, and it just might be necessary for you now. Think of it as a blessing, part of your spiritual path. You will probably end up healthier and more vibrant than most everyone else around you...

Bea

Mother of Jibril Enthusiast
Hope this helps! You don't have to be a passive victim and just wait for what may or may not happen. All the above is good for anyone, and it just might be necessary for you now. Think of it as a blessing, part of your spiritual path. You will probably end up healthier and more vibrant than most everyone else around you...

This is good advice :)

I'm already doing some of the things you mentioned... vitamin D (4000iu per day), fish oil, digestive enzymes (plus Betaine HCl)... I'm adding more garlic and dark green vegetables to my diet and I've cut way, WAY back on all processed foods and sugars. I love the sauna... I wish I had time to go more often.

What I'm wondering about is the herbs... are they safe to take while breastfeeding? I had a bad reaction to caprylic acid (chills, headache, swollen lymph nodes, achy feeling all over). After reading about how candida absorbs mercury, I'm a little worried to go messing around with the balance of flora in my body in any dramatic way :(


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WestyPDX Newbie
Also, not sure they can diagnose lymphoma by a CT scan anyway.

I've been told recently that they can't, but they can see abnormalities which might be a lymphoma, then investigate further. In my case, the radiologist saw a few things that didn't look quite normal in an abdominal CT scan, so my doctor consulted with Dr. Green in the Celiac Center at Columbia on how to proceed. What I was told was that they could use the biopsies preserved from my endoscopy + colonoscopy I had in November, and count the lymphocytes by type. Having a wide array of them is an indication that the body's natural defense mechanism is working normally. Having predominantly one type of the T-cell variety is an indication that it is running wild attacking the body, which is lymphoma, or cancer. (I'm not a doctor, this is simply what my notes say.)

Happily, I checked out okay, but they want to review things again after the inflammation in my jejunum has receded.

veggienft Rookie

Cancer can only survive on sugar. Humans can survive on other things.

.......your choice.

..

Mother of Jibril Enthusiast
Cancer can only survive on sugar. Humans can survive on other things.

I know this is your particular drumbeat...

http://junkfoodscience.blogspot.com/2008/0...use-cancer.html

I think yolo's suggestions are generally very healthy and consider the well-being of the whole person... physically, mentally, and spiritually.

Stress causes autoimmune disorders to flare... freaking out could really set me back :)

veggienft Rookie
I know this is your particular drumbeat...

http://junkfoodscience.blogspot.com/2008/0...use-cancer.html

I think yolo's suggestions are generally very healthy and consider the well-being of the whole person... physically, mentally, and spiritually.

Stress causes autoimmune disorders to flare... freaking out could really set me back :)

Your website says the idea that sugar ingestion feeds cancer is just a baseless hoax, and offers as evidence an unrelated baseless hoax. This is not one of the other baseless hoaxes.

Your website claims there is no scientific evidence supporting the claim that sugar causes cancer.

Incorrect.

It's known as the Warburg effect, named after a Germany doctor who discovered it in the early 20th century. The reason it has had little (not "no") scientific study is that western governments refuse to approve any study which withholds sugar from cancer patients. .........as if withholding sugar from someone's diet would harm them. The only recent such study is:

http://www.time.com/time/health/article/0,...1662484,00.html

It withheld sugar from patients with cancer so advanced that they had no hope of living. They replaced sugar with protein and oils. The result? Something like 80 percent of the participants' cancers stayed unchanged or their cancers went into remission. However, the study noted a very high dropout rate from people who could not adhere to a no-sugar diet.

Lessee .......I wonder what the source of resistance to this concept could be?

It's not like western oncologists don't know about this. The gold-standard method of finding cancer is a PET scan. The cancer patient is placed on a no-carb diet for 12 hours. Then a tech injects radioactive glucose, and takes an x-ray image. The glucose radiates in the places where the cancer consumes it.

I'd like to say this is all western medicine's fault, but it's not. Western medicine "treats" cancer only in ways demanded by its patients.

And your link is incorrect in stating that the body's sole method of feeding cells in the absence of ingested sugar is to manufacture sugar from other food. The body is quite happy converting fats and oils into ketones for consumption. In the absence of ingested sugar, the liver mitochondria convert amino acids into glucose for the few brain cells which have no mitochondrial capacity for consuming ketones. The process is regulated so that the blood contains only the amount of sugar needed by those cells.

..

Mother of Jibril Enthusiast

OK... so your "evidence" is a TIME magazine article about a scientific study that has not yet been peer-reviewed or published. Only seven people were willing to stick with the sugar-free diet and two of them still died. Have the other five people gone into remission? It's probably too early to tell. I'm no statistician, but I have to tell you that this study has some flaws...

1. The sample size is WAY too small to get any valuable data. Seven people is meaningless (when it comes to science... nothing against them personally)

2. It's not a random sample... you can't force people to stop eating sugar. I realize it might not be the end of the world (gluten-free is not... corn-free is not...), but if I knew I only had a few months left on earth I would NOT spend that time being somebody's guinea pig. This is a common problem with scientific studies involving people. The Nazis found a way around it... but that is not a model of research we should be emulating!!

As someone who has a PhD, I have to tell you that it takes a lot of intelligence, passion, and a bit of luck to finish a graduate degree... especially in the hard sciences. My guess is that a lot of oncologists and people who do cancer research have been personally affected by it. Don't you think they would do just about anything to find some answers?

Clearly, food affects our health. Not all doctors are good doctors. I have plenty of reasons not to trust them. BUT... I still trust the basic idea of medical research. Apparently, you do too if you're concerned about sources of evidence.

veggienft Rookie
Don't you think they would do just about anything to find some answers?

Do junkies choose life, or the next fix?

As evidenced by the Wurzberg study, against all logic, sadly the answer is "no". A very large percentage of people, especially people who's bodies produce cancer, choose death over sugar abstinance. For the medical establishment, the motives are acceptibility and profit motive ......because, for onlookers the motive is social paradigm .......food is what our mothers said food is ........well, our tasty selections from that list.

Historically, agricultural carbohydrates are the prime reason for social and political upheaval in expanding societies. As those societies age, agricultural carbohydrates weaken populations into ineffectiveness. Finally agricultural carbohydrates become responsible for the decline of those cultures.

I'm sorry your science won't stand up without starting a credentials challenge.

..

stellar Newbie

Thanks to all for your advice. I must say I was surprised on the amount of feedback I received! I'm so glad I found a place to vent and "talk" to people who understand what I'm going through.

Stellar :)

YoloGx Rookie
This is good advice :)

I'm already doing some of the things you mentioned... vitamin D (4000iu per day), fish oil, digestive enzymes (plus Betaine HCl)... I'm adding more garlic and dark green vegetables to my diet and I've cut way, WAY back on all processed foods and sugars. I love the sauna... I wish I had time to go more often.

What I'm wondering about is the herbs... are they safe to take while breastfeeding? I had a bad reaction to caprylic acid (chills, headache, swollen lymph nodes, achy feeling all over). After reading about how candida absorbs mercury, I'm a little worried to go messing around with the balance of flora in my body in any dramatic way :(

I'll look up the safety of dandelion and other of the heavy duty herbs as far as safety with breastfeeding. Wasn't thinking about that. However peppermint, chamomile are completely safe, as is marshmallow root and slippery elm.

If you have had a bad reaction to capryllic acid, it really would indicate to me you probably have a yeast/fungal/candida overgrowth or some such infection. One way to really check this is to go off all sugars and quickly digestible carbohydrates plus reduce carbs in general. If you go into withdrawal (become b%$@#y and upset etc. can't seem to function clearly etc.) then its very likely you have some kind of fungal/yeast thing. In this case you need to reduce your carbs and sugars drastically if you want to get rid of the inflammation in your nodes. You should expect some reaction to the die off for at least a week (maybe longer--esp,. if you can't take regular anti yeast products) but it will be worth it. Saunas and exercise can really help. Garlic yes: I don't know about oregano oil and breastfeeding. Enterically coated acidophilus should really help too... I used to use pao de arco but discovered its an immune stimulant, not the best thing for us with celiac.

And by the way, once you get a yeast infection, it often returns. It often requires a lifelong vigilance... Sorry!!

I forget, how old is your infant -- did you say?

Bea

Mother of Jibril Enthusiast
I'll look up the safety of dandelion and other of the heavy duty herbs as far as safety with breastfeeding. Wasn't thinking about that. However peppermint, chamomile are completely safe, as is marshmallow root and slippery elm.

If you have had a bad reaction to capryllic acid, it really would indicate to me you probably have a yeast/fungal/candida overgrowth or some such infection. One way to really check this is to go off all sugars and quickly digestible carbohydrates plus reduce carbs in general. If you go into withdrawal (become b%$@#y and upset etc. can't seem to function clearly etc.) then its very likely you have some kind of fungal/yeast thing. In this case you need to reduce your carbs and sugars drastically if you want to get rid of the inflammation in your nodes. You should expect some reaction to the die off for at least a week (maybe longer--esp,. if you can't take regular anti yeast products) but it will be worth it. Saunas and exercise can really help. Garlic yes: I don't know about oregano oil and breastfeeding. Enterically coated acidophilus should really help too... I used to use pao de arco but discovered its an immune stimulant, not the best thing for us with celiac.

And by the way, once you get a yeast infection, it often returns. It often requires a lifelong vigilance... Sorry!!

I forget, how old is your infant -- did you say?

Bea

Thanks for getting back to me!

My son is ten months old... I suspect he'll be breastfeeding for at least another year.

Last month I had a biopsy for an itchy (gluten-enhanced) rash that I thought was DH, but the results came back as "acute dermatitis"... I found a definition that said it's "a rash caused by inflammation somewhere else in the body, often in the presence of a fungal infection." I also have yeast overgrowth on my scalp... my dermatologist gave me a prescription shampoo for it. <_< I've been SUPER cautious about gluten and corn for the last month, which has helped. Now that the holidays are over I've sharply reduced the amount of processed (and moldy/yeasty/sugary) foods in my diet, although my birthday is on Tuesday and I'm planning to have a little dark chocolate :P

Should I be taking something to kill off the yeast/infection? :unsure: I was only taking two capsules of caprylic acid per day and the reaction was BAD. I don't think I can handle a week of feeling like I have the flu. Not with a new semester starting, food to cook, two small children to take care of, and a husband who means well but is not always helpful.

I actually feel pretty good... the swollen lymph node scares me a little (and I am getting it checked out), but as long as I'm not endangering my health I would prefer to take a slow and steady approach :)

lovegrov Collaborator

Cancer can only survive on sugar. Humans can survive on other things.

.......your choice.

Even in the highly dubious "evidence" you present, there's nothing that claims cancer can survive ONLY on sugar. And even the researchers who seem to think they're on to something admit that getting off sugar is no miracle cure.

richard

veggienft Rookie
Even in the highly dubious "evidence" you present, there's nothing that claims cancer can survive ONLY on sugar.

Incorrect.

http://www.time.com/time/health/article/0,...1662484,00.html

From the article I linked:

---------------------------------------------------------------------------------

........In 1924, the German Nobel laureate Otto Warburg first published his observations of a common feature he saw in fast-growing tumors: unlike healthy cells, which generate energy by metabolizing sugar in their mitochondria, cancer cells appeared to fuel themselves exclusively through glycolysis, a less-efficient means of creating energy through the fermentation of sugar in the cytoplasm........

.........The theory is simple: If most aggressive cancers rely on the fermentation of sugar for growing and dividing, then take away the sugar and they should stop spreading. Meanwhile, normal body and brain cells should be able to handle the sugar starvation; they can switch to generating energy from fatty molecules called ketone bodies

YoloGx Rookie
Thanks for getting back to me!

My son is ten months old... I suspect he'll be breastfeeding for at least another year.

Last month I had a biopsy for an itchy (gluten-enhanced) rash that I thought was DH, but the results came back as "acute dermatitis"... I found a definition that said it's "a rash caused by inflammation somewhere else in the body, often in the presence of a fungal infection." I also have yeast overgrowth on my scalp... my dermatologist gave me a prescription shampoo for it. <_< I've been SUPER cautious about gluten and corn for the last month, which has helped. Now that the holidays are over I've sharply reduced the amount of processed (and moldy/yeasty/sugary) foods in my diet, although my birthday is on Tuesday and I'm planning to have a little dark chocolate :P

Should I be taking something to kill off the yeast/infection? :unsure: I was only taking two capsules of caprylic acid per day and the reaction was BAD. I don't think I can handle a week of feeling like I have the flu. Not with a new semester starting, food to cook, two small children to take care of, and a husband who means well but is not always helpful.

I actually feel pretty good... the swollen lymph node scares me a little (and I am getting it checked out), but as long as I'm not endangering my health I would prefer to take a slow and steady approach :)

You can go real slow to get rid of the fungal infection. I totally understand. It can make you crazy going through that die quick off. It may take forever but eventually you will get there. Just do the enterically coated acidophilus and enterically coated garlic perhaps and maybe oregano or thyme oil that you rub on your wrists and lymph points (those things!!) now an then (though again we need to check on the infant thing on this too...). And just do the no sugar, low or no quick carb. diet.

I honestly think the lymph problems you are having are a result of the yeast/fungal infection. To help your system along, eat lots of fresh parsley and coriander as well as lots of fresh greens in general. Celery is great too. The saunas are a good idea...plus exercise! And lots and lots of water...

Still haven't had a chance to look up the liver and lymph herbs and babies yet. But will do so soon. Just have been swamped of late...

Bea

Mother of Jibril Enthusiast

A little update...

On Thursday I had a biopsy of that lymph node. It's not lymphoma! :D :D :D It's not any kind of malignancy at all. They did see some macrophages... so it looks like some kind of infection. Hopefully it will go away on the broad-spectrum antibiotic I'm taking. Not thrilled about antibiotics... but I'm taking probiotics in between doses and going VERY easy on the sugars/fruits (plus no yeasty/moldy foods).

What a HUGE relief. :ph34r:

digmom1014 Enthusiast

Mother of Jibril---

I am so happy for you! I was thinking about you a lot. I know that must have be scary for you to have to make that wait. Waiting is the hardest part!

I didn't want to write before since you weren't sure and didn't have a clear diagnosis. I was nervous when you mentioned the elevated white count. A CBC w/platelet differencial is a blood test that my drs used in the past with me.

I am a leukemia/lymphoma survivor and I do believe that the link with our disease is there. I do not have any scientific evidence to offer, only that each person in my family that display's gluten symptoms has also had some form of cancer.

So glad for your good news-

jerseyangel Proficient
A little update...

What good news!! Thank goodness :D

Mother of Jibril Enthusiast
Mother of Jibril---

I am so happy for you! I was thinking about you a lot. I know that must have be scary for you to have to make that wait. Waiting is the hardest part!

I didn't want to write before since you weren't sure and didn't have a clear diagnosis. I was nervous when you mentioned the elevated white count. A CBC w/platelet differencial is a blood test that my drs used in the past with me.

I am a leukemia/lymphoma survivor and I do believe that the link with our disease is there. I do not have any scientific evidence to offer, only that each person in my family that display's gluten symptoms has also had some form of cancer.

So glad for your good news-

Thank you for thinking of me! Thanks to Patti too :)

I agree with you about the general link to cancer. My dad's family has been plagued with it. Two siblings (out of eight) have died from breast cancer, one when she was only 29. Her two kids were just a little bit older than mine are right now. I've been thinking about her a lot. I also think about her daughter, who was a year younger than me and committed suicide in her 20s. Depression and alcoholism run in the family too... more signs of gluten intolerance, I imagine.

Last week it occured to me that I could get past records of CBCs from my OB's office. It turns out that my WBC and platelets have been all over the place the last few years... sometimes up (out of range), sometimes down. It will be interesting to see what happens now that I'm not constantly inflamed from eating gluten and corn.

Congratulations on your own survival!!!

YoloGx Rookie

It is great news! What a relief!

Do you know what kind of infection, bacterial or yeast?

Also, if bacterial, be certain to do anticandida stuff afterwards to counteract the effect of the antibiotics. Candida is opportunistic and will likely flourish with the antibiotics. A good enteric coated acidophilus is de riguer.

Bea

Bobs Wife Newbie

OMG - YES Lymphoma and Celiac can be related.

Please stay on the gluten free diet if you have Celiac. My husband was diagnosed with Celiac in Dec. 2002, in Feb. 2003 he was diagnosed with lymphoma after a bowel perforation and died in March 2003 - only 11 days later.

My husband saw many doctors for over a year and no one found out that he had Celiac or lymphoma until it was too late. Also my DH - Bob had just turned 41 years old.

My DS was diagnosed at age 9, having Celiac

My DD was diagnosed at age 4, Having Celiac.

My kids are now 15 and 9 and doing very well. They are well Aware that they should not CHEAT.

Good luck to all.

Dawn

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      Would someone point me to a good injera recipe?
    • Kathleen JJ
      @trents The first thought indeed I had was 'thank god it's not cancer' and of course, there are many, many, many worse diagnoses to get. But this doesn't mean it doesn't come as a shock. I read a lot of the time 'the most common symptoms are...' and then all the things he doesn't have, but never do I find a list of less common symptoms (bar @Wheatwackeds examples - and also non of these are present). I get that severe pains can be a symptom, though the fact that they were omnipresent for 10 days (the exact time his viral values were up) and then 6 weeks later 1 episode also when the family was going through a stomach bug, and since then (nor ever before) none, this logically seems more related to a virus then a symptom of Coeliac, as I'd think this would have to be more present on a regular basis? He always has loved gluten-containing food and at that time was rather having less of it (due to the bug and feeling a little under the weather so eating more yoghurt and the likes then cookies) then more of it. It just doesn't sound all that logical. That being said, I comprehend AND accept that things can not always be logical.   I am trying to understand what you are saying about the tolerance - so as long as he eats gluten, he will have some tolerance to it, but when he stops, and say accidentally ingests something, he will react more as the tolerance is lower? It sounds so illogical (hmm, I see a pattern with myself: really looking for logic in a very illogical condition). And how do you interpret the values very 6 months as you maybe don't know there has been an accidental intake?  Do the values ever go down to zero or is it a question of getting them mainly lower and can they never go down to normal rates?   Normally results of his biopsy are coming in on monday, a little chance they come in today. I've been checking my mail every 10 seconds 🤦🏻‍♀️, this will not be a productive working day I fear 🙄. Then we know the values, but we only have an appointment with the specialized pediatrician and dietitian on December 6d (which in Belgium is a children's holiday comparable to Santa Clause). So we'll get the full "introduction" to the disorder and approach then.   I did talk to the pediatrician and gastrointestinal doctor who did the gastroscopy asking their advice about a plan I was having: to wait to start the diet after the holiday season, we will be abroad in a hotel and to start there in this very new world feels quite stressful for us, but even worse: it will start this journey in a lot of negativity. So our plan is to have a "yummy" party after we return from our trip, during Christmas holidays, inviting some of his friends and buying and making a vast array of gluten free goodies and having them sample and score it. This way it feels like a festive thing AND we can immediately find some things (hopefully) he genuinely like.   Both doctors agreed with this approach as this was truly an accidental find and hadn't we tested his blood 2 weeks ago chances were we'd only have found out in a year or 2 so those extra few weeks will not make the difference.   So now I'm gathering information, talking to people to know where there's good stuff...     But what keeps on being quite ununderstandable to me (I hope this will get explained on December 6th) is how it works. So it's auto-immune, meaning gluten trigger an immune response. Is this a black and white thing? Does 1 grain of wheat trigger the same response as a full bowl of spaghetti? And I mean this on a bowel and organs level, not on a symptoms level, as I gather (is this correct?) that not having any symptoms does not mean that his bowel doesn't get attacked?   I know it all could be worse, I truly do, but to be honest, this is the 4th "anvil falling on my head out of a clear blue sky" diagnosis that I got for one of my most loved people. First my mother was diagnosed with presenile dementia without anyone in the family having it. Then my unborn daughter turned out to have a chromosomal defect that made that she could only live inside of me and died when she was born, then my sister turned out to have (a tested non genetic 🤯) form of presenile dementia as well, with me being her only caretaker as my mother passed away a few years ago and she has no family of her own. And now this. And this is absolutely not only the least of this row but of course not even in the same ball park. But for my resilience and bearing capacity this just feels not little as it affects the life of my little boy...    
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