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Late Athenian

Help, 30 years old, 2 children in diapers and my life is suddenly falling apart.

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First of all, thank you for reading. I'm at my wit's end and I desperately need help.

I'm a 30 year old mother of two little girls; one is 2 years 8mos and one is 7mos. After my second baby I started to have joint pain in my hands and feet. I thought it was a postpartum fluke and settled the matter on the Mommy Forums: a lot of other women experienced it, were tested for RA, it came back negative, and symptoms went away after breastfeeding. Very well, I had always been strong as an adult (not as a child), I figured this would be the case for me too. 

Fast forward to 4.5 mos postpartum. Attempted to keep my work from home job (very few hours) while keeping my two small children at home. Burning the candle at both ends. Coffee in the morning, wine in the evening, not eating enough calories or food of good quality. Suddenly, the foods I was used to eating began making me very sick. Eggs in the morning gave me debilitating nausea that lasted all day long. Was it my gallbladder, I wondered. I could not eat most animal fats without consequence and could only tolerate small, vegetable focused meals. I lost 10 lbs in 10 days...while breastfeeding (no, I was not overweight). The situation began to be dire; I was getting weak and felt like I was starving but my body would rebel against processing anything that would nourish it. I saw the gastroenterologist: "Acute gastritis." I was put on ranitidine by the gastroenterologist, 75mg, 2x a day. I asked how long, got a vague answer that I could be on "a long time." Months, I ask? Yes, and brushed off. 

I go home and focus on healing, not suspecting gluten at this point. I develop more symptoms: tingling in my feet and hands starting in April, which has developed into pain and numbness as of May. I had gradually been losing sensitivity in my big toe over the winter this year, but I assumed it was some nail abnormality; now I think it was autoimmune. Random stabbing pains everywhere intermittently, more plugged ducts from BFing, chest tightness when I stretch with my arms over my head. My skin looks less lustrous and a little saggy, and I often have a red tint beneath the surface and especially on my face. There have been a couple of times where I have been good for a couple weeks at a time, feeling almost normal, and that was when I was avoiding gluten. However, recently I feel nearly back to where I started.

For the past week, I have dramatically reduced my carb intake and cut out all grains, limiting my food to meat, vegetables, fruit and nut spreads with an occasional glass of raw milk, since I still have some. My chiropractor told me to cut out casein because it is cross-reactive with gluten. I am currently having worse pain in my hands and I'm now having pain in my elbows and stiffness in my knees. My joints pop frequently. It is hard to keep weight on; I'm down to 129, and before I got pregnant I was always 132. I don't know what to eat! I am afraid everything I am eating is poisoning me. I think I am in ketosis. I am constantly thirsty, have dry mouth, my muscles are twitching all over, and without the carbs I had been eating I have been constipated and having very hard stools. I'm trying to drink lots of bone broth and stock every day and stick to the Full GAPS diet. I think my gut has been compromised for a long time: I tested GBS+ with both of my babies. I am hoping that by cutting out the carbs and regularly eating probiotic foods, I can starve the bad bacteria of life. I know a lot of people recommend cutting out dairy because of casein, but I need a good source of strength and calcium and amino acids because I'm a breastfeeding mother. 

My PCP told me after a slew of bloodwork, "Frankly, I don't think there's anything wrong with you. Aches and pains happen as you get older." My experience in the medical establishment has been enough to make me cry. I have dragged my two children all over creation from appointment to appointment to fight for every test I've had done. I have an appointment with a naturopath who specializes in nutrition in two weeks, but in the meanwhile I really feel like I am in having a health crisis and I do not know what to do to help myself. 

I have been trying to come off of the ranitidine for a long time, unsuccessfully. I will come off of it for a while and then my nausea will return. I recently learned this can be because of people who have been on PPIs for a long time can require a taper drug: https://ndnr.com/gastrointestinal/neuropathy-long-term-ppi-use-a-case-study/ And also that I shouldn't have been using the stuff much longer than 6wks: https://chriskresser.com/fda-sounds-alarm-on-dangers-of-antacid-drugs/ When the stomach irritation kicks into high gear, this seems to be the only way to calm it down. 

I've been tested for ANA (lupus, RA, etc.), rheumatoid factor, CRP, diabetes, Celiac's disease and everything has come back normal. I don't have double vision or problems with strength, balance or coordination. I have an appointment with a neurologist and with another gastroenterologist, and I'm hoping to have an endoscopy done. I was exposed to gluten last weekend and that seems to have kicked my body back into high gear, but I'm really not sure that's what's going on. I saw a neurologist in my early 20s about a motor and vocal tic I had, and she told me about the gut brain connection and that I might be ingesting something I was intolerant to. I was young and blithe then and it was all Greek to me, so to speak, and I didn't understand my immune system then. I did do a paleo diet then and felt better than I ever had, but because of the social restrictions it placed on my life I gave it up. As a child, I suffered from constipation, allergies and hyperactivity, which now that I understand the autoimmune concept does sound a lot like Celiac's.

I am struggling both practically and emotionally, I feel like Celiac's disease is a social death sentence. I can never call a friend to meet me at a restaurant again because of the possibility of cross-contamination causing my body to enter its self-destruct sequence. I don't know what to eat. Just a couple of weeks ago I felt like my health was returning, I was regular, good energy, now I feel like death. If you've read this long into my post, God bless you, and seriously, thank you.

Edited by Late Athenian
Forgot some details - thanks

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1 hour ago, Late Athenian said:

First of all, thank you for reading. I'm at my wit's end and I desperately need help.

I'm a 30 year old mother of two little girls; one is 2 years 8mos and one is 7mos. After my second baby I started to have joint pain in my hands and feet. I thought it was a postpartum fluke and settled the matter on the Mommy Forums: a lot of other women experienced it, were tested for RA, it came back negative, and symptoms went away after breastfeeding. Very well, I had always been strong as an adult (not as a child), I figured this would be the case for me too. 

Fast forward to 4.5 mos postpartum. Attempted to keep my work from home job (very few hours) while keeping my two small children at home. Burning the candle at both ends. Coffee in the morning, wine in the evening, not eating enough calories or food of good quality. Suddenly, the foods I was used to eating began making me very sick. Eggs in the morning gave me debilitating nausea that lasted all day long. Was it my gallbladder, I wondered. I could not eat most animal fats without consequence and could only tolerate small, vegetable focused meals. I lost 10 lbs in 10 days...while breastfeeding (no, I was not overweight). The situation began to be dire; I was getting weak and felt like I was starving but my body would rebel against processing anything that would nourish it. I saw the gastroenterologist: "Acute gastritis." I was put on ranitidine by the gastroenterologist, 75mg, 2x a day. I asked how long, got a vague answer that I could be on "a long time." Months, I ask? Yes, and brushed off. 

I go home and focus on healing, not suspecting gluten at this point. I develop more symptoms: tingling in my feet and hands starting in April, which has developed into pain and numbness as of May. I had gradually been losing sensitivity in my big toe over the winter this year, but I assumed it was some nail abnormality; now I think it was autoimmune. Random stabbing pains everywhere intermittently, more plugged ducts from BFing, chest tightness when I stretch with my arms over my head. My skin looks less lustrous and a little saggy, and I often have a red tint beneath the surface and especially on my face. There have been a couple of times where I have been good for a couple weeks at a time, feeling almost normal, and that was when I was avoiding gluten. However, recently I feel nearly back to where I started.

For the past week, I have dramatically reduced my carb intake and cut out all grains, limiting my food to meat, vegetables, fruit and nut spreads with an occasional glass of raw milk, since I still have some. My chiropractor told me to cut out casein because it is cross-reactive with gluten. I am currently having worse pain in my hands and I'm now having pain in my elbows and stiffness in my knees. My joints pop frequently. It is hard to keep weight on; I'm down to 129, and before I got pregnant I was always 132. I don't know what to eat! I am afraid everything I am eating is poisoning me. I think I am in ketosis. I am constantly thirsty, have dry mouth, my muscles are twitching all over, and without the carbs I had been eating I have been constipated and having very hard stools. I'm trying to drink lots of bone broth and stock every day and stick to the Full GAPS diet. I think my gut has been compromised for a long time: I tested GBS+ with both of my babies. I am hoping that by cutting out the carbs and regularly eating probiotic foods, I can starve the bad bacteria of life. I know a lot of people recommend cutting out dairy because of casein, but I need a good source of strength and calcium and amino acids because I'm a breastfeeding mother. 

My PCP told me after a slew of bloodwork, "Frankly, I don't think there's anything wrong with you. Aches and pains happen as you get older." My experience in the medical establishment has been enough to make me cry. I have dragged my two children all over creation from appointment to appointment to fight for every test I've had done. I have an appointment with a naturopath who specializes in nutrition in two weeks, but in the meanwhile I really feel like I am in having a health crisis and I do not know what to do to help myself. 

I have been trying to come off of the ranitidine for a long time, unsuccessfully. I will come off of it for a while and then my nausea will return. I recently learned this can be because of people who have been on PPIs for a long time can require a taper drug: https://ndnr.com/gastrointestinal/neuropathy-long-term-ppi-use-a-case-study/ And also that I shouldn't have been using the stuff much longer than 6wks: https://chriskresser.com/fda-sounds-alarm-on-dangers-of-antacid-drugs/ When the stomach irritation kicks into high gear, this seems to be the only way to calm it down. 

I've been tested for ANA (lupus, RA, etc.), rheumatoid factor, CRP, diabetes, Celiac's disease and everything has come back normal. I don't have double vision or problems with strength, balance or coordination. I have an appointment with a neurologist and with another gastroenterologist, and I'm hoping to have an endoscopy done. I was exposed to gluten last weekend and that seems to have kicked my body back into high gear, but I'm really not sure that's what's going on. I saw a neurologist in my early 20s about a motor and vocal tic I had, and she told me about the gut brain connection and that I might be ingesting something I was intolerant to. I was young and blithe then and it was all Greek to me, so to speak, and I didn't understand my immune system then. I did do a paleo diet then and felt better than I ever had, but because of the social restrictions it placed on my life I gave it up. As a child, I suffered from constipation, allergies and hyperactivity, which now that I understand the autoimmune concept does sound a lot like Celiac's.

I am struggling both practically and emotionally, I feel like Celiac's disease is a social death sentence. I can never call a friend to meet me at a restaurant again because of the possibility of cross-contamination causing my body to enter its self-destruct sequence. I don't know what to eat. Just a couple of weeks ago I felt like my health was returning, I was regular, good energy, now I feel like death. If you've read this long into my post, God bless you, and seriously, thank you.

To test for celiac you have to be eating gluten daily for 8-12 weeks for a blood test and about 2 weeks for them to do the endoscope test.
https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/
https://celiac.org/about-celiac-disease/screening-and-diagnosis/diagnosis/

If you do not wish to go through with this but stick to a low carb diet and keto and need meal ideas, Ketosummit and Ketogenic girl have tons of recipes. I even do some recipes here on my blog.

The meat digestion is something I had for a few years, I was fine with egg whites but egg yolks made me sick, greasy foods made me sick and meats often were vomited up and came out undigested. I found it was an issue with my pancreas and not having the enzymes to break down the fats and proteins. You have to take them in ratios to what you eat, I like the keto ones from Realzymes along with taking pig pancreas enzymes and extra lipase with heavy fat meals. I can now lean meats and some heavier ones in moderation but still nothing greasy.
https://www.celiac.com/forums/topic/119919-digestive-enzymes/

I will get back to this in a bit with some more topics and info, I need to go fix lunch and deliver to a family

 

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Have you had a vitamin panel done? My bloodwork showed my folic acid was terribly low. I thought it was the Celiac but my gene testing showed I had one MTHFR gene. I now avoid folic acid rich foods and take 3000mg L-methyfolate daily. This helped my joint pain. It has to do with the inability of my body converting folic acid to the absorbable l-methyfolate. I have also been diagnosed with Myofascial pain syndrome (was in a major car accident in 94) and Fibromyalgia (I am positive for the FMa autoimmune test).

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ok, step one:  breathe!!  you're going to be ok.  you sound like many of us who have been failed by the medical community.  so, you're not crazy.  these people just don't have celiac on their radar and they just don't care to skip treating all your symptoms ($$$) which will go away if you are celiac and stick to the gluten free diet.  no, casein does not cross react with gluten <see what I mean, lolz)

I BET they didn't tell you that pregnancy/childbirth is a common trigger for celiac.  well, it is.  like pikeagirl said:  I would be curious to see what your vitamin and mineral levels are doing.  celiac will starve you to death (I lost an unimaginable amount of weight and my gp wanted to put me on a feeding tube.  now, I had been seeing the same doc for TWENTY YEARS and been treated for everything from pneumonia to weird rashes to potassium deficiency <lolz they called with my test results and told me to eat a banana immediately!!  haha)  and I guess they figured they might as well throw the celiac guess out there.  TURNS OUT, it's caused by the same gene that caused my son's type 1 diabetes and my daughter's r.a. - so, if that sort of thing runs in your family, you're a prime candidate.  thyroid disease, as well as other lovely autoimmune diseases walk hand in hand with that pesky gene.   tests for celiac are just about hit & miss, bc they just do an igg/iga - there are better tests.  cyclinglady knows the (dmg?  is that right lolz)  anyways, if you are interested in going through all the testing, you must continue to eat gluten.  my g.i. doc never had me to do a gluten challenge bc I was so very underweight they were concerned I wouldn't survive it.  you are nursing, so that is taking what little you have and giving it to baby.  maybe you should go off gluten until you're finished nursing?   if you are indeed celiac or gluten intolerant, you will start to feel better ie more energy for your lil' sweet babies :) 

if you're worried about the ranitidine, you can certainly break them into smaller doses, but if they're working, that's the least of your worries.  

if you do decide to go on a STRICT gluten free diet, you will probably want to skip dairy for awhile until your villi can get a chance to heal <bc that's where the enzyme to digest lactose is made on the tips of the villi)

skip eating out until you are comfortable with the diet.  the most times I have gotten 'glutened' in the past 9 years have been from restaurants.  if you want to meet friends out, just eat at home first and go for the company and maybe a glass of vino or two ;) 

finally, the diet is a pain, no doubt.  but it becomes a 'new normal' and dying of malnutrition is so f'ing inconvenient :D 

Edited by notme!
spazzed and posted prematurely :)

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Thank you everyone for the advice.

Ennis, I've been avoiding gluten for over a month, and did some rotational eating to see if it would spike my symptoms, and it appears to. I was eating gluten regularly when I was blood tested w/ the main diagnostic tool - Total IgA - and that was negative. But what I have going on is autoimmune and everything I read says gluten can be a shadow culprit for precipitating autoimmune and to cut it out as soon as possible. Which is sad. At least I got to go to France in April and have baguettes and chocolate croissants before I figured this out! No better place to eat bread so I guess that's off my bucket list, haha.

Pikakegirl, I have NOT had a vitamin panel done, though I have requested one! And I had read that vitamin deficiencies can cause peripheral neuropathy. I did have B12/folic acid drawn, and that came back normal. So whatever it is, it isn't that. Where/how did you do gene testing? Through insurance or out of pocket? Is Fibromyalgia a part of an ANA test or is that a specific other test?

notme!, ha, yes, breathe is good advice! I went from being strong and vital and weight lifting to having my body inexplicably turn on me and my left arm giving out while I was zesting limes last night... I'm sure you can tell I'm just scared. My father has rheumatoid arthritis and Type II diabetes. However, he worked in a chemical plant for 49 years, drank heavily and never took care of himself. My mom has fibromyalgia which she thinks she got from Lyme's, and had thyroid issues--again, does not take care of herself. I haven't been a health all star but I also have taken pretty good care of myself by American standards all these years so I thought I wouldn't develop these diseases, but I've grown up in an even more polluted world than they have and we can't control all of our environmental triggers. You have my sympathy on the dying of malnutrition, I have felt that way during the course of this stuff. I have found many stories online of women having autoimmune issues onset after specifically second babies. So fits that trend, like you said. Where/how did you do gene testing? Through insurance or out of pocket? 

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lolz, i'm not dying in real life.  i'm almost back to my normal weight - took me this long I suspect because my kid that triggered the gene was 25 (hence 25 years worth of gut damage) and I guess it probably took longer to heal than someone who had not been suffering with it for that long.  like you, I was active and healthy before such onset.

your mom and dad are your gene tests, lolz - fibro is thought to be simply undiagnosed celiac.  celiac is systemic, so it attacks your gut.  in turn, your gut is damaged so it can't absorb and distribute nutrients.  your body needs those nutrients to stay healthy and function.  if your mom, just say, is indeed a celiac it would definitely damage her nerves and cause her nerve pain, hence the fibro dx.  I didn't ever have gene tests, the conditions my children are burdened with are my proof.  (daughter finally embraced the gluten-free diet after they gave her the igg/iga test and it was negative.  but - she came down with thrush that started in her intestines and grew up her throat into her mouth (ulcers) and that was enough for her.  it only occurs in adults with compromised immune systems, she had been having fatigue, gut issues, headaches, weird rashes, tingling and numbness in her hands and feet, etc.  she is doing great on the gluten-free diet.  my brother also went gluten free but first, he had every test known to man - he was even having heart palps, they told him they were going to cut out part of his intestines then they said 'just kidding there's nothing there' he finally got tired of running to the e.r.

I had vertigo, migraines, rashes, super super tired - all kinds of wonderful things (NOT) not to mention nothing was digesting.  I mean, it was like, I would eat and then it would come out the other end.  I honestly thought I had cancer of some sort and was shocked when every test came back negative.  my vitamins were outta wack - yeah, I was handed the 'you're getting older' speech.  you are much younger than I was.  don't waste time suffering.  sounds like you have gotten many other things ruled out and celiac is a slippery diagnosis in my opinion - I think it's bc there's no expensive drug or procedure to cure it, so they would rather treat the myriad of symptoms than tell you to adjust your diet <which they make zero doll hairs bc your symptoms will clear on their own.  I can tell you my quality of life is 1 million percent better and I am back to doing some walking for cardio.  I am 50 something, don't wanna over achieve lololz but I can still chase down my grandkids to whoop 'em.  hahaha  :D 

read the newbie 101 (scott!  see?  ;) ) thread in the coping section.  we have all been in your shoes and no questions are dumb questions.  also, our 'eeew' settings are pretty lax.  this is an interactive celiac forum and we have heard it allll before.  we'll get ya straight.  

ps - as I am typing this, my oldest daughter is texting me they think she has thyroid problems.  she just gave birth to her third.  they told her at the doctors that childbirth can trigger autoimmune diseases.  whaaaaaaaa……???  ;) :) ;) 

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57 minutes ago, Late Athenian said:

Ennis, I've been avoiding gluten for over a month, and did some rotational eating to see if it would spike my symptoms, and it appears to. I was eating gluten regularly when I was blood tested w/ the main diagnostic tool - Total IgA - and that was negative. But what I have going on is autoimmune and everything I read says gluten can be a shadow culprit for precipitating autoimmune and to cut it out as soon as possible. Which is sad. At least I got to go to France in April and have baguettes and chocolate croissants before I figured this out! No better place to eat bread so I guess that's off my bucket list, haha.

...I do believe total IgA is used to check for IGA deficiency...not celiac. You should have been tested with tTG-IgA, and the full panel is normally suggested
tTG IgA and tTG IgG
-DGP IgA and DGP IgG
-EMA IgA

But some people still test negative on all blood test but have the damage show on an endoscope

Gene testing can be done from various angles either by a direct lab or a roundabout way, I got my genes done on ancestery.com then had a friend who manages issues with genetic take my raw dna data and check my genes I was negative for the main ones but had a rare one known to cause the issues...and several others I had like UC.

But sounds like your pretty sure gluten is an issue, either way, might help to read over the newbie 101 sections.
https://www.celiac.com/forums/topic/91878-newbie-info-101/
Most of my limited social life (I am autistic so my social skills suck by default) involves me cooking gluten free meals and inviting people over or delivering them. I mean heck you can do alot of foods naturally gluten free IE ribs, chili, casseroles, roast, salad and shrimp, steak, etc. and invite friends over. Offer cider, rum, and wine as added incentives...seems to work for me. Some other dishes are easily changed I do a modified stir fry I sell at markets and even just delivered a half food pan of. But for now focus on easy to digest, soft cooked and bland as you can meals for yourself (think of your intestines as carpet burned) staying away from spices, acidic, and rough foods.

 

 

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Total IGA doesn’t have “ negative” as a possibility - it is normal, low or high and does not test for Celiac.  Sounds like they didn’t actually test you for Celiac. 

 

https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

Edited by kareng

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Hi LA,

I'm sorry to hear that you are not feeling well.  (((((Hugs)))))

It doesn't sound like you've had a full celiac panel (Ennis lists the tests above).  Many Dr's will only check the main one TTG IgA, which is unfortunate, because some people may only get a positive on one of the other tests.

I'm also wondering if you've had a full thyroid workup.  That would include TSH, Free T4, Free T3, TPOAb and TgAb.   Autoimmune thyroid disease is often triggered by pregnancy and childbirth.

My first pregnancy triggered thyroid issues and my third triggered celiac.  The second only caused gestational diabetes and had to have my appendix out!  LOL!

I would ask to have a full celiac panel if you can go back on gluten as well as a full thyroid workup.  It definitely sounds autoimmune.

I hope you feel better!

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