Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Now What Do I Do?
0

12 posts in this topic

I'm 41 years old and have had most of the Celiac symptoms all of my life. I had horrible anemia when I was young and have battled it forever. I've been diagnosed with PMDD, pre menstral disorder dystphoria. This comes with bloating, horrible mood swings, depression, night sweats, and insomnia. A few years later, hypothyroidism. A few years later the doctor wanted to do a colonoscopy to find out why I had the diarreha so bad and why I was still so anemiac. I was diagnosed with IBS. Two years later planter fascitis. I've since had 2 additional colonascopies due to the fact that my mother was diagnosed with colon cancer and almost died.

In September, during my yearly exam, they found all kinds of good information. A breast lump, which turned out to be a large cist. My thyroid is still too low, even though the doc. increased the dose twice. My hemmogolbon is still LOW, still anemiac... and my cholestorol is above 200. So off I was to another colonoscopy. And again nothing found. That doctor suggested to my doc. to test for CELIAC.

I could not beleive all of the symptoms that I have had. I have 3 daughters that have had many of these symptoms as well. When I asked my doc. he ordered the tests but didn't seem alarmed at all. Today he called and the tests were all normal. I couldn't beleive it! I thought we finally found out why I have felt SO horrible all of these years.

He did order an upper GI to be done next week, but thinks that will turn out ok.

Are there any other disorders that are like Celiac? Any other suggestions? This is not something that I wanted to have, however, I was hoping to find an answer......know I feel lost again.

Please help,

Dawn

0

Share this post


Link to post
Share on other sites


Ads by Google:

Which blood tests were done? And were you on the gluten free diet when these tests were done?

Are there any other disorders that are like Celiac? Any other suggestions? This is not something that I wanted to have, however, I was hoping to find an answer......know I feel lost again.
You could be intolerant to gluten without having celiac disease, which would cause some of these problems. Also, you could be intolerant to other foods such as dairy, soy, eggs, corn, ect. I am dairy intolerant in addition to having celiac disease and dairy alone can make me quite miserable. I have to read ingrentient lists for dairy and avoid dairy cross contamination or else I get quite ill.

The other diseases that can have similar symptoms as celiac disease are chron's disease, ulcerative colitis, and collagenous collitis. Has you doctor checked for these?

0

Share this post


Link to post
Share on other sites
I'm 41 years old and have had most of the Celiac symptoms all of my life. I had horrible anemia when I was young and have battled it forever. I've been diagnosed with PMDD, pre menstral disorder dystphoria. This comes with bloating, horrible mood swings, depression, night sweats, and insomnia. A few years later, hypothyroidism. A few years later the doctor wanted to do a colonoscopy to find out why I had the diarreha so bad and why I was still so anemiac. I was diagnosed with IBS. Two years later planter fascitis. I've since had 2 additional colonascopies due to the fact that my mother was diagnosed with colon cancer and almost died.

In September, during my yearly exam, they found all kinds of good information. A breast lump, which turned out to be a large cist. My thyroid is still too low, even though the doc. increased the dose twice. My hemmogolbon is still LOW, still anemiac... and my cholestorol is above 200. So off I was to another colonoscopy. And again nothing found. That doctor suggested to my doc. to test for CELIAC.

I could not beleive all of the symptoms that I have had. I have 3 daughters that have had many of these symptoms as well. When I asked my doc. he ordered the tests but didn't seem alarmed at all. Today he called and the tests were all normal. I couldn't beleive it! I thought we finally found out why I have felt SO horrible all of these years.

He did order an upper GI to be done next week, but thinks that will turn out ok.

Are there any other disorders that are like Celiac? Any other suggestions? This is not something that I wanted to have, however, I was hoping to find an answer......know I feel lost again.

Please help,

Dawn

Please find out what tests he ran and what the actual results were. He may be hesitant to dx you with "something so difficult to deal with" (<-- please note the sarcasm!) and be glossing over an inconclusive or "borderline positive" result.

0

Share this post


Link to post
Share on other sites

Thanks for the posts. I will ask him for the test results and which ones were actually tested. I've looked for what is normal and test levels on the site and can't find any info...

I'll ask on Monday when I schedule upper GI that he wants me to do.

Thanks again,

Dawn

0

Share this post


Link to post
Share on other sites

This experience is shared by so many I lost count. I'd suggest going gluten-free and see what happens. You don't need a doctor to do that, and it's safe and healthy either way. If you really want a doctor to tell you that you have gluten intolerance and/or Celiac disease however, keep in mind that many get false negatives if they aren't consuming gluten up to/during the time. There are apparently some tests which can do a better job of detecting it, though I can't speak from experience. There are other members on this board who can tell you first hand about it.

For many, the best test by far is trying the gluten-free diet. The solution is the same with an "official" diagnosis anyway.

0

Share this post


Link to post
Share on other sites




I agree with Rice Guy. It wouldn't hurt, and you might be surprised by the results.

0

Share this post


Link to post
Share on other sites

Your story sounds like mine, I'm 55 and chasing this since I was 25. I've learned a few things that might help. Celiac/Gluten intolerance is your first best bet. Hormonal fluctuations can cause lots of your symptoms (PMDD, pre menstral disorder dystphoria. ... bloating, horrible mood swings, depression, night sweats, and insomnia) and can go hand in hand with hypothyroidism. I've lost my salivary glands and thyroid (hashimoto's disease) due to the gluten autoimmunity. Also, my new MD says Synthroid can destroy the thyroid with long term use. She prescribes Levothroid & Cytomel along with natural Progesterone, over the counter. I had to fiddle with the Progestrone cream til I found my level.

I'd had several "fanny cams" but never found a MD or GI interested in dietary causes. Turns out, a rotation diet to find sensitivies and gluten/sugar elimation with probiotics and antifungals, and I'm doing pretty well. Check posts for yeast, probably an issue, too.

My stools were tiny and erratic, so MD is doing detox (mixed product with bentonite, herbs, prune powder, etc.) to clear narrowed gut from layers & layers of toxins and bad muscle tone from gluten. Sorry, it's gross, but will allow my system to rebuild, retone, and restore villi for dairy tolerance and nutrient absorption. There are some pictures on web search for colon cleansing that help keep me on the right path!

Re breast lump, I've heard enough to convince me they are yeast/fungus related. A good TV show Know the Cause we get on Dish 223 10:am weekdays (they have website same name) shows cancer probably caused by fungus, or fungal colonies mistaken for cancer in breasts, lung, brain. They had a guest that eliminated her breast cancer while under treatment of regular MD (he "allowed" her to try diet, antifungals, probiotics under his supervision although he didn't believe it til he saw it.)

Trying to follow your post along, I had sky high triglycerides, had heart stent for blockage. Once gluten free, yeast free, my triglycerides went from 380 to 117. Triglycerides are a byproduct of yeast/fungus mycotoxins.

My take is not to worry about having extensive testing, or the results if you do. Try actions like gluten free diet, antifungals, probiotics, good vitamins plus C, Calcium, D3.

Funny, the old Hippocratic oath MD's take said something like "Let food be your medicine" but they've taken it out in mordern days. Well, back to basics, I guess...

LOL, Kathy

0

Share this post


Link to post
Share on other sites

If you do decide to go gluten free, any tests for celiac disease after starting the gluten free diet could be false negative.

0

Share this post


Link to post
Share on other sites

Well, if after all tests it still comes back negative it couldn't hurt to try the diet to see if it's an intolerance or an allergy to some other food.

0

Share this post


Link to post
Share on other sites

I also got "everything's normal" result on my celiac blood tests. My doctor told me he didn't know what else to do for me. Gotta love that.

Through trial and error, research and education, I've figured out that both gluten and casein (dairy protein) are problems for me. I'm working on figuring out what other food sensitivities I may have.

I've decided getting an official diagnosis is somewhat overrated. For years, I had "irritable bowel syndrome." Docs gave me antispasmodics and anti-anxiety meds to mask the symptoms, but no one ever tried to get to the cause. Eventually, I was diagnosed with "ulcerative colitis." Again, I was given medication and told there was nothing I could do but wait until I got sick enough to have my colon removed.

I've had to struggle to find my own answers. A gluten and dairy free diet works for me. Any time I start to doubt it, all I have to do is eat a little of either and my body will be happy to remind me.

0

Share this post


Link to post
Share on other sites
I also got "everything's normal" result on my celiac blood tests. My doctor told me he didn't know what else to do for me. Gotta love that.

Through trial and error, research and education, I've figured out that both gluten and casein (dairy protein) are problems for me. I'm working on figuring out what other food sensitivities I may have.

I've decided getting an official diagnosis is somewhat overrated. For years, I had "irritable bowel syndrome." Docs gave me antispasmodics and anti-anxiety meds to mask the symptoms, but no one ever tried to get to the cause. Eventually, I was diagnosed with "ulcerative colitis." Again, I was given medication and told there was nothing I could do but wait until I got sick enough to have my colon removed.

I've had to struggle to find my own answers. A gluten and dairy free diet works for me. Any time I start to doubt it, all I have to do is eat a little of either and my body will be happy to remind me.

My own dr. says "you don't need the paper to tell you - listen to your body". He did run the blood panel, but it came up perfectly "normal". I do so miss dairy, and hope to one day be able to have it again! But for now - it's working, so I'll keep doing it!

0

Share this post


Link to post
Share on other sites
My own dr. says "you don't need the paper to tell you - listen to your body".

I like your doctor! :D

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,688
    • Total Posts
      921,755
  • Topics

  • Posts

    • Yeah I ended up allergic to corn, olives, sesame, whey, and peanuts and intolerant to dairy, soy, yeast, enzyme issues with breaking down meats, and egg yolks, along with extreme bloat with any kind of carbs/sugars in moderate amounts. And very adverse reactions to certain artificial sweeteners. So your not alone in all the other issues cropping up, it happens as our bodies adjust.  I eat a bunch of stir frys with veggies, egg whites, plenty of  avocados, and toasted and raw forms of almonds, coconut, cashews, walnuts, hemp seeds, pumpkin seeds, flax seeds, sancha inchi seeds, chia seeds, and sunflower seeds in all forms including making them into butters, spreads, and incorporating them into sauces.   Most meals are forms of soups, omelettes, and stir frys. I do the seeds and nuts on rotation same with my veggies and snack on fruits in small amounts along with some homemade baked goods I make for markets. I do suggest a rotation of foods, my dietician said I need to rotate my foods to prevent more issues, making sure I am off one one for at least 7-14 days at a time completely. I find changing up the spices and rotating my cuisine base works well. I also make puddings, and protein shakes along with nut/seed milks, and different bases and extract flavorings to get my random cravings Taken care of. Guess take what you can from this and and see how it can help you,    As to the tinging, I ended up with both B vitamin and magnesium deficiency issues, the magnesium one caused a fire like tingling in my arms, legs and back, along with muscle pain. Ended up on a doctors best powder form of it so I can dose it out right, and found epsom salt bathes helped.  
    • Hi, I've gained so much knowledge on this forum over the past few months, which I am so thankful for. I can see how much hell people are going through with this disease and it's so lovely to see how much support and advice people give to others on here. I'd like a little bit of reassurance and advice myself from anyone that can help. I've been gluten free for six months. Two weeks after going gluten free I realised I also had a problem with corn so cut out processed food. Over the following weeks and months I continually had problems with food; fruit, dairy, a lot of vegetables, nuts, soya....it's basically dwindled down to just eating potatoes (not white potatoes), cucumber, lettuce, small amounts of red onion, spring onion, sprouts and beetroot. There may be more things I could be okay with but to be honest I'm too scared to try.  Is this all normal? Am I an extreme case? I've been taking some digestive enzymes and probiotics for about six weeks, my acid reflux has dramatically decreased but I always have a lot of loud noises going on in my guts, I'm guessing this is the probiotics working.  I've lost nearly 3st in weight since this started - which I'm not complaining about as I was overweight due to thyroid problems. I've had loads of blood tests done recently, all organs are working 'great' according to my doctor, the only thing they've picked up on is ketones, I seem to be having a glucose problem, which might explain my exhaustion and weight loss. I also have permanent numbness and sometimes tingling in one of my legs and sometimes hands and one shoulder, I thought it could have vitamin B12 deficiency but that's okay according to blood tests. I would be greatful for any replies. Thanks for reading.
    • Hi everyone, I am doing job in restaurant at evening 5 to 12 during working hours no time to do a dinner. I'm thinking to make a shake but don't know the gluten free vitamin or supplement brand which one is good for me and easily available in Berlin Germany to make me fit cause last one week i feel weak. I'm 28 year old. Sincerely
    • Hey there just wanted to warn anyone that has other allergies- these crackers may not be a good choice! I'm mildly sensitive to MSG- I only react if there's a giant amount like in Chinese food or Ramen noodles, etc.  I literally have a to eat TONS of a the offending food before reacting.  Anyway, I was excited to try these Trader Joes pumpkin crackers, kept hearing about them on the radio .... and they're gluten free!  (I have Hashi's).  I ate about 3/4 of the box last night. Woke up this morning with a red itchy face and nasal congestion, headache, anxiety. Hallmark symptoms for me of high MSG intake. (It does say yeast extract on the side but it's pretty far down the list). So if you're sensitive.... stay away! Apparently these particular crackers are loaded with it. 
    • I admit, my blood panel was "mildly positive" with only the DPG IGA being the positive, yet I had a Marsh Stage IIIB (pathologist report) though my visual on the endoscopy was fine.  celiac disease can be hard to diagnose, that is for sure.  
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,689
    • Most Online
      3,093

    Newest Member
    Kelly Calcagno
    Joined