Feels like I’ve had chemo – could it be more than just celiac disease?

@cmdavis88 Hi, and welcome to Connect. I am so sorry you are feeling so miserable. You have a huge multitude of symptoms. I presume you have gone to a doctor about these. What type of doctor are you seeing? I would think the first stop would be a gastroenterologist.

I hope you are in an area with top-notch medical care so you can get this diagnosed. I hate to sound like a broken record to other people who have been on Connect longer, but if you are not in an area with really top medical care, and you do not get a reasonable, appropriate, and prompt diagnosis and treatment, please get to a major medical center. If you do get a diagnosis but find it questionable, most insurance will pay for a second opinion I think. It can be worth paying for a second opinion yourself if necessary. You can't really live your life feeling as you do.

I have been through not getting a diagnosis in a lengthy amount of time and thankfully everything turned out OK but it could have gone sideways if I had gone much longer without a diagnosis.
JK

Yes, I have seen a gastroenterologist. They confirmed I have celiac disease but it feels like it is much more than just that. I think I may go for a second opinion. It just feels like there is more going on than just that.

@cmdavis88 It never hurts to get a second opinion, and it can be very reassuring to know you are on the right track. Make sure that the second opinion is from a really excellent gastroenterologist.

I know very little about celiac overall, just that it is caused by wheat. My son had it when he was a toddler getting his second-year teeth. At that time we were pre-internet so I researched everywhere I could to find info and sure enough, some children do get a form of celiac when teething. The poor little thing, if I didn't get to his diaper right away he would end up with raw skin, and the stench would knock you over.
JK

I have had it since I was a child. I have been misdiagnosed and overdosed over the years with epilepsy due to it causing me to have a seizure at the age of 2. Narcolepsy due to the fatique of wanting to sleep all of the time. Bloating was blamed on common misconceptions of having a full belly, pain in the abdomen misdiagnosed as having a tummy ache from a full belly, and ADHD where they also had me on 1000 mgs a day 500 Ritalin for the ADHD and 500 grams of depokote. And so forth. Maybe it's nothing but it just feels like it may have manifested into something else.

Hello @cmdavis88,

I’m so sorry to learn about your celiac disease diagnosis – I can only imagine the impact it must have on day-to-day life!
I would sincerely encourage you to view the Gastroenterology & GI Surgery Page on Connect – https://connect.mayoclinic.org/page/gastroenterology-and-gi-surgery/ which has some great videos by Mayo Clinic experts, on celiac disease and other digestive conditions.

For instance, you might be interested in viewing these videos, in which Dr. Joseph Murray discusses...
– Does Celiac Disease Contribute to Other Autoimmune Diseases? https://connect.mayoclinic.org/page/gastroenterology-and-gi-surgery/newsfeed-post/does-celiac-disease-contribute-to-other-autoimmune-diseases-2/
– The Pathways to Celiac Disease https://connect.mayoclinic.org/page/gastroenterology-and-gi-surgery/newsfeed-post/the-pathways-to-celiac-disease-2/

I’d like to introduce you to a few members who’ve discussed similar symptoms and/or celiac disease; please meet @sue225 @jjren @astaingegerdm @bbrownco @oakbourne @vanessab @jenniferhunter.

According to Mayo Clinic: As many as 30 percent of people with celiac disease may not have, or be able to maintain, a good response to a gluten-free diet. People with nonresponsive celiac disease may have additional conditions, such as bacteria in the small intestine (bacterial overgrowth), microscopic colitis, poor pancreas function, irritable bowel syndrome or intolerance to disaccharides (lactose and fructose). Or, they may have refractory celiac disease.” https://www.mayoclinic.org/diseases-conditions/celiac-disease/symptoms-causes/syc-20352220

@cmdavis88, as @contentandwell mentioned, are you able to get another opinion? Or perhaps rule out any of the above-mentioned conditions?

I don't know but I'll try and go ahead and make another appointment.

@cmdavis88 I think that all the symptoms you mentioned are symptoms of celiac disease. I would think that your doctor would have done some tests or imaging to rule out other diseases with similar symptoms. You can always ask that question and put your mind at ease. For me, the gluten problems came on right after a huge stressful event when I had my first surgery. I figured it out because I researched online and at the time, my primary care doctor would not test me for celiac because I didn't have the long term effects from years of inflammation, so I diagnosed myself and went gluten free years ago when it was not known very well. I developed other food allergies right after I became gluten intolerant because it caused a leaky gut, with absorption of food that was not fully broken down. You may also have other food allergies. I figured out mine by an elimination diet, and when you get to where your diet is free from foods that cause a bad response, it's easy to tell right away when something is wrong. Healing from many years of inflammation and malnourishment will take some time, but the body has a remarkable ability to heal if you give it what it needs. You may have issues of malabsorption of essential vitamins and minerals, so ask to be tested. These can be administered by IV if needed. There are many good supplements that are gluten free with live bacteria that is needed in your GI tract and any time you have antibiotics, it's good to restock your gut bacteria. Ask a doctor's recommendation for what is guaranteed to have a count of live essential bacteria. My doctor prescribed Claire Complete (which requires refrigeration). You are making progress and feeling better, so listen to your body. You are on the right track. If you do have other food allergies, the symptoms can be the same as with gluten. Maybe a nutritionist can help. Humans were not really adapted to eat grains, and our diets were that of hunter gatherers of meat and vegetables. It was during biblical times that cultivation of grains made it possible for the human population to grow. Cultivation of wheat also changed with genetic engineering and the increased use of pesticides. I've read that chemicals are sprayed on wheat right before a harvest because it increases the yield which seems to coincide in time with the increased numbers of people with gluten problems. Gluten is toxic to you. There are gluten free medical foods for detoxification from companies like Metagenics and Orthomolecular. I have had my doctors prescribe them for me, and you can buy them without a prescription. This would be a good question to ask a doctor because you may not be able to absorb enough nutrients by mouth for this to be effective because of the damage and loss of surface area in your intestinal tract. Just take it one day at a time. Sometimes we are a puzzle of interlocking issues that we find piece by piece, and the journey through that will either answer all the questions or you will find new questions to ask. It's too early in your recovery to think that this is a bigger problem than celiac disease. I have read that Celiac patients do have increased risk of other autoimmune disease. It might not be a bad idea to have your thyroid function checked. That is the master gland of your body that controls your metabolism, and if that is abnormal, it will affect everything. I also have Hashimoto's Thyroiditsis which s an autoimmune condition where my thyroid levels are low and they fluctuate. I had all my silver amalgam fillings removed from my mouth which was suggested by my doctor because the mercury that leaches out of the fillings damages the thyroid. It was only after doing that, that the antibody levels could be read in a blood test because before that they were off the charts. If you have an overactive thyroid, it could affect your weight and cause weight loss. I say that only because it could be an overlapping symptom that hasn't been considered, and it could be an issue in your recovery. You've had this a long time and the recovery will also likely take a long time. The important thing is you are getting better. You may also find help with an environmental medicine doctor as a doctor who tries to prevent disease rather than treat symptoms and there is a provider search for them at https://www.aaemonline.org/find.php Please stay in touch and let us know how you are doing.