Fairly Sure That Mom And I Have Celiac..

[atan91]

Hi all, I've been lurking for a while but finally feel it's time to post. I think celiac is a definite possibility for my mom. For now I consider myself "gluten sensitive" but am unsure of what the diagnosis really is. I apologize if things are repeated/unclear in this post- I'm experiencing quite the brain fog.

I'll start with my mom:

Diagnosed with type 2 diabetes, fibromyalgia, rheumatoid arthritis in both knees, arthritis in the back, and more recently, unknown liver problems (but confirmed it is NOT cancer, thank goodness). Doctors assume it is fatty liver. However, from what I've read, I hear the diabetes, fibro, arthritis and liver problems can be caused by celiac.

Other symptoms:

- no periods for a year (she is only 45)

- had gallbladder problems at a very young age- was removed at 15

- constant sinus problems- recently had surgery to fix this

- canker sores

- severe bloating

- severe weight fluctuations/water retention (8-10 pounds in a few days). this is a huge problem for her as she is trying to lose weight, and no matter how much she exercises or how properly she eats (and believe me she eats well), she always has extreme fluctuations

- swollen ankles

- abdominal pain

- aching bones in legs/arms

- muscle pain

- numbness/tingling

- anxiety/depression

- trouble sleeping

- constant lethargy

- itchy skin (no rash- can be a symptom of liver problems as well)

- constant brain fog

- dizziness

- generally not feeling quite right

I showed her an extensive list of symptoms and she identified with pretty much every single one. She is getting a pelvic ultrasound next Friday to rule out any other cause for lack of periods, and is seeing her GP right after that. She is going to ask for a full celiac panel. She is still eating gluten at this point.

As for me:

20 years old. I have felt "off" for the last three years. I got so used to feeling that way that I figured it was normal and never questioned it. On July 27 of this year I experienced the worst stomach ache/nausea/intestinal pains/overall sickness of my life.. and it lasted a week straight without letting up until I cut out gluten cold turkey. My symptoms improved over the course of a few days. I had a blood test about 2 weeks after cutting gluten (I was new to this whole thing), but it came back negative due to my diet and I don't believe I received a full panel test. Recently, since putting my mom's symptoms together, I've been thinking about doing a proper gluten challenge so I can get more accurate test results. I've been eating quaker oats for breakfast for the past month and will explain my symptoms below. I'd really like a firm diagnosis because I feel like this is more than just a sensitivity, but I don't know how I feel about self-diagnosing and I'm scared to start eating gluten again.

Symptoms:

- I was ALWAYS bloated, even in the morning. Sometimes I'd wake up ok but for the most part it was a 24/7 deal. It was not uncommon for me to look like I was 9 months pregnant by the end of the day.

- Swollen hands and fingers, to the point where I couldn't get some of my favorite rings past my knuckles.

- Always had a stomach ache, especially after eating bread, ESPECIALLY after eating pasta. I'd frequently wake up with stomach aches as well.

- After eating gluten, I had what felt like a painful lump in my throat that would stay for hours.

- Severely lethargic. I'd sleep for 12 hours overnight and sleep another 5+ hours in the afternoon, and still be able to sleep a ridiculous amount the next night. Had a really hard time even thinking about getting out of bed.

- Constant brain fog. I'd often forget words, had a hard time formulating sentences, had a hard time reading things (would have to read sentences over and over again), would get up to do something and forget what I was going to do, would have no memory of what I did earlier in the day, conversations I had, etc.

- Constantly gassy. I would pass gas at least 30-40 times a day. After cutting gluten, passing gas is actually a rarity when I am strict with my diet.

- Random nausea

- Very severe anxiety about everything. I believed my heart palpitations to be a result of this, but I hear they can be caused by celiac as well?

- In the months leading up to the July meltdown, my BMs were very loose (not quite diarrhea but not quite formed), very smelly and sticky. I had to clean my toilet daily because of the marks it left. They were also very frequent and I sometimes felt like I couldn't find a bathroom fast enough.

- Intestinal pain mostly in the upper left quadrant

- I am very, very pale. I haven't been tested for anemia.

- Canker sores started showing up A LOT in the months leading up to July this year. I had about five in my mouth at one time when it was at its worst and they didn't go away for weeks.

- Always congested

After cutting out gluten, these symptoms disappeared completely. I have been accidentally glutened a few times since then and my symptoms return within a few hours- extreme bloating, gas, confusion, lethargy.

For the past month I have been eating quaker oats for breakfast, meaning for the past month I have gone back to feeling terrible. Lethargic, bloating, gas, intestinal pain, anxiety, brain fog, constipation. I've also had the occasional poop with clear mucous. I get random stabbing pains in my left side (usually upper left) and right side. I've been trying to type this post for about 25 minutes now and it's been extremely hard for me because of how hard it is to put words together or remember words in general. There is a cloud where my brain should be. I don't feel right at all and I'm scared to see what would happen if I ate a bowl of gluteny pasta or a sandwich with regular bread just once, let alone on a regular basis for a few months to get tested.

I know you might be wondering why I want to confirm a diagnosis so badly if gluten is poison to me. It's because I want to really know what I should be worried about. I don't want to make myself more vulnerable to cancer, etc. by not worrying much about cross-contamination if this indeed celiac and not just a sensitivity. Any help, advice, would be very appreciated. Please let me know if you need me to clear anything up.

[Newbee]

Sounds like you both very possibly have celiac disease. Your brain fog sounds very similar to what I have. I really thought my symptoms (besides the brain fog) were not really that bad but I am in the late stages of the disease so you really never know. It is best to be tested and important to know what is really wrong with you. If you've been gluten free for awhile I'm not sure how long you have to eat gluten again before the tests will be accurate, but I imagine others may know. I've heard those that are gluten intolerant can have the same symptoms as someone with celiac, so hard to know which you have without being tested. As celiacs can have other diseases (like osteoperosis) it is important to know what if you have it or not to know what else you might be at risk for. I know this is frustrating and disturbing. Hang in there and good luck.

[AVR1962]

Goodness, thank goodness you are looking into this! I am 48 and it was my daughter who helped me and it was thru her that I went gluten-free initially, I too was very sick and docs could not figure out why. It is very possible from what you have listed as your mom's symptoms that she may have gluten ataxia, look it up. This is from nerve damage. More than likely her body is not absorbing nutrients which in return causing more and more issues. I REALLY hope she will listen to you and not rely solely on docs. I would hate to see where I would be today had I only depended on docs for help.

She could always request a celiac test and she could stay on gluten until were performed but regardless of the oputcome of those tests I would highly suggest she try going off glutens for 2 months. At her age she might not like this idea, I didn't. And, I hate to say this, but she needs to go off dairy for 2 months also. Once the villa is damaged there's other parts of the digestive system that break down and stop functioning properly, and one thing that does happen is the body has trouble digesting dairy. This does not have to be permanent but you do have to allow the body a chance to heal. Dairy can really tear up the digestive track. I am a cheese lover so this was even worse news to me than going off glutens.

Do you are she have any burning feeling in the stomach? Feel any possible acid reflux issues? Burning in the stomach is from acid and even if you never have had acid reflux issues if you/she is feeling it at all, you ahve to go to the extra measures to protect your stomach. Take antacid before meals, cut out the coffee, spice and the alcohol...very hard on the stomach. I had it (GERD) real bad and was on Nexium for 5 months and doing pepto shots in between. My stomach was raw from the acid. I went on a low acidic diet which helped alot.

IF YOU DECIDE TO GO OFF GLUTEN, realize that there is more than likely going to be detox symptoms and you might wonder if you made the right choice. It is like a detox from anything.

I will also put this out to you too, as it may take months for a doc to come up with anything, if they would ever tell you this at all. But it is possible that your mom might need some extra help from supplementing. If she is dead hard against it, fine. HAVE HER READ if you can encourage it as any nerve damage is not going to improve on its own. This is what I have found that has helped me. I did this all thru research on the Internet after finding out all my low markings on my lab work which my doc never informed me of. And do one other thing before taking any supplements, look up and read about vitamin toxity as there are certain vitamins that can cause us issues if we take in too much. Vitamin A is one of those vits. I do not suggest taking A as a supplement, too many possibilities.

Vit D- (keep under 5000 IU total daily unless doc gives okay) to help absorb calcium, irritability and dizziness or vertigo, crawling sensation on skin, joint pain, poor concentration, memory

B Complex, (I use WSN Nerve Support Formula) for tingling in hands or feet, hot feet, anemia, nerve damage, buzzing in ears, neuropathy issues

Magnesium- (250 mg, 2-3 daily) for confusion and poor memory, fatigue, disturbed sleep/insomnia, irritability, muscle twitching, muscle contraction.

Zinc- (35 mg) supports immune system, hair loss, taste loss issues. I couple this with copper to help with absortion

Potassium- (99 mg, 1-2 daily) regulate nerve transmissions and muscle contractions, restless legs, charlie horses

Iron- for anemia, important to take with vit c rich foods

Silicon drops- helps maintain bone density and strength by facilitating the deposit of calcium and other minerals into bone tissue, helps with hair loss and strengthens nails

(Vitamin A- use cod liver oil instead)

Triple Omega- (burpless 3,6,9) An underlying cause of cancer is low cellular oxygenation levels. In newly formed cells, low levels of oxygen damage respiration enzymes so that they cells cannot produce energy using oxygen. These cells can then turn cancerous. Can help the muscles feel less hard from what feels like a lactose build up.

Vitamin C- protection against immune system deficiencies, cardiovascular disease, eye disease, improves skin

Selenium and L glutamine help with absorbtion

Probiotic- boost immune system

Keep us posted on what you decide to do. I would be veery interested in your progress and I wish you all the best!

[atan91]

Hi! Thank you for the replies!

My mom is very pro-gluten-free. I told her that even if the tests come back negative, she should go gluten-free anyway, and she agrees. I'll talk to her about going DF as well. We've been doing a lot of looking into celiac and also cushing's which is a real possibility for her. I'll have a talk with her about the vitamins as well. She knows not to rely solely on doctors and to really listen to her own instincts as well, as she's had to deal with them a lot and knows they're not always reliable.

I don't have any stomach burning, and as far as I know, my mom doesn't either.

I think what I'm scared of for the both of us is that we won't be taken seriously, especially her. We live in different provinces (I in Manitoba and she in BC.. I am not a fan of BC doctors at all). She tells her doctor about her weight fluctuations and her doctor tells her to walk more. My mom walks an hour a day, usually at least 4x a week. She was referred to another GP to see if he had any ideas and he didn't believe her when she told him how much she exercises and what she eats and he told her she needed lap band surgery and pretty much degraded her the whole time. It's heartbreaking. My doctor is pretty great but you just never know. I have an appointment with her on the 7th so I'll ask then about challenging gluten. I've already been glutening myself with the oats for a month and it's unpleasant, though not as unpleasant as when I had a high-gluten diet.

[Jai]

Wow. What a story. My understanding is that to do a gluten challenge you must eat gluten for 8 weeks. 8 weeks is long enough to get very sick again. That is why, in my case, my Drs agreed that this was unnecessary. My bloodwork, which was done while technically still on gluten (although, I'd hardly eaten for a week, had diarhea 8x/day and was dehydrated) came back negative. But, since I immediately went gluten-free after the blood test and it took over 3 weeks to get back results, I'd had enough time to see improvement (not one of those miracle stories where I stopped eating gluten and was "all better" within a week) but enough that we all decided heck no to a gluten challenge! My mom was also diagnosed with celiac 4 years ago...

Regardless of what you both decide for traditional tests, I would absolutely do your clinical testing on a gluten-free diet. Of course your mom seems like she needs more help than just that at this point.

Good luck and stay strong!

[atan91]

Is it possible to diagnose on a failed gluten challenge alone? I have an appointment with my doctor on November 7th and an appointment with an allergist on December 7 (for a tingly tongue/mouth/face after eating nutella)- is there anything specific I should be asking either of them?

[stanleymonkey]

if your mom is in bc tether to join mid main clinic on main street in Vancouver, we travel from inc to the clinic because they are so nice, agency daughter had a severe allergic reaction and they contacted allergist that day and got an lei pen for her without making us just wait for a federally an allergist

ask for doctor McKnight or Joubert, they are great,also Gupta if she is still doing locum there

if all else fails see the nurse Amra, she is awesome

[atan91]

Update: I was officially diagnosed with celiac disease this morning based on my symptoms alone. I attempted a gluten challenge on October 31 and had to stop on November 1 because I felt like I was knocking on death's door.

Mom got blood tests on the 4th and is currently waiting for the results!