Gluten free and still not feeling "normal"

[Holleychica]

Ok this is going to be a lot of symptoms, but here it goes. I got diagnosed with Celiacs at the end of December 2015. I went 100% gluten free and felt initially a lot better bc I wasn't sick with nausea and vomiting on the regular. I also had to get iron infusions to get my blood levels back to normal. 

It's now end of March. I haven't changed my diet much besides eliminating gluten, if anything I eat healthier...but I have always eaten healthy. I have gained 10lbs! What in the world?! Even pre-Celiacs before I was sick I never gained weight easily my entire life...so this seems crazy to me. Also my bowel habits drastically changed and I am irregular or if I am regular it's not a lot of poop (sorry TMI). I also have never had back acne before and got that, is this related to my diet change? I still get bloating and stomach cramps in the evenings ALOT. 

I initially felt better, but now I don't feel good just different symptoms than before my diagnosis. I have been trying to eat clean and add probiotics to be diet, drink Kombucha, I even made bone broth trying to heal my gut in the initial process of going gluten free. I also just started working out again. Anyone else struggle with this a couple months after diagnosis and going gluten free? I dunno what else to do. 

[Irene Joanne]

I can relate. I was diagnosed one month before you- I did have two accidental glutenings though and a dose of antibiotics that really put me back.  I'm booked to see an allergist today because I'm having multiple reactions to gluten free foods as well. My dietician told me it's normal to have other food sensitivities come up when a person goes undiagnosed for a long time. As my intestines heal- that should get better. 

I saw an internist yesterday for a stress test because of chest pains that started two weeks after going gluten free. Stress test was great but my blood pressure was not. There are many foods that make me feel very ill and give me a rash- I had that yesterday too at the same time as my blood pressure was really high- so I'm pretty sure my allergic reactions are also causing very high blood pressure. The internist said I won't start feeling better with the celiac for at least a year. 

Im trying to be patient- but it is worrisome when new things keep coming up. I felt quite a bit better a few days after going gluten free, but things kind of went downhill from there. The accidental glutenings and antibiotics really created problems that are still there. 

I too have a lot of bloating still- worse at night. It's hard to tell if it's contamination or just all the other food reactions I'm having. Hang in there! Together we'll find healing- slowly but surely. 

Maybe check iron levels again? Look into other food sensitivities?

weight gain is really normal and for most people seems to level out again. My weight hasn't changed yet- but I am slightly overweight and have been for a few years.

[Newly Diagnosed]

I was diagnosed in December also.  I also have developed back acne but somehow my facial acne has improved.  I have small rashes now that I did not have before.  I did not have many symptoms prior to being diagnosed, except heartburn every single night, so I initially felt worse because all of a sudden my body was adjusting to a new diet.  I think I had gluten withdrawal.  Now I still would say I do not feel as good as I did before diagnosis, but the heartburn is improving some at least.  I am trying to be patient as my body heals but I go back to my GI for a follow up in a few weeks and will definitely ask about that.  I agree with Irene, I have also been told it can take up to a year to heal.  Plus I go back and forth mentally with the lifestyle change.  For the most part I don't really notice, but when I go somewhere and can't eat what everyone else is eating...

[Emilybronte30]

I'm so sorry to hear that you're struggling.  After being diagnosed with Celiac a little over a year ago, and being very strict gluten free, my health still continued to decline.  It is VERY common to have other health issues, especially gut issues with Celiac Disease, because it has caused internal damage - candida overgrowth, lactose intolerance, and sensitivities to other grains.  My gastroenterologists recommended going dairy free for at least a month - the part of your villi (the stuff in your intestines that the Celiac causes to be damaged) that digests lactose (the sugar in dairy) is on the very tip.  So, until you're fully healed, lactose can really upset your stomach.  I also ended up having to eliminate ALL grains.  This was due to an alternative medicine treatment I'm going through called nutritional response therapy (after going to a gastroenterologist, and endocrinologist, and a rheumatologist, which took about 6 months without any help, I started looking for alternative treatments).  That nutritionist was able to determine that my body was reacting to other grains.  After searching online I found it's pretty common for people with Celiac to react to the protein found in other grains - our immune systems can get "confused" and "see" other grain proteins as gluten.  I also ended up eliminating cane sugar all together, and use only small amounts of honey or maple syrup.  I don't know if it would help, but after years of fighting minor breakouts on my face, my skin is now completely clear - I also have actual color in my face and the dark circles under my eyes have lightened a lot.  This happened after eliminating the sugar.  I haven't had to fight the weight gain, but I know that (per all three specialists I saw) that there is a definite link between Celiac and Hashimotos Thyroiditis - when your immune systems starts attacking your thyroid.  My thyroid antibodies are high, which means that some day I will probably develop Hashimotos.  Western medicine has no preventative treatments for autoimmune diseases.  However, there is a determined group of people who fight it with diet.  The AIP diet (autoimmune paleo diet) is a big one - also GAPS has helped a lot of people.  The change in diet has made a HUGE difference for me.  I still get tired much easier than I'd like, but I feel like myself again.  I'd gotten to the point that I didn't even want to go outside and play with my children because I felt so sick and exhausted and uncomfortable.  I just came inside from playing on the trampoline with my daughter.  The road to healing looks different for everyone, but don't stop searching for answers or fighting!  Your health is worth it, and you are worth it!

[TheJamieJay]

I was diagnosed with celiac just over 10 years ago. I feel your pain - literally 

Maybe try natural sugars with a low glycemic index. Essentially, it is common for the small intestine to become overpopulated with bacteria because the gluten-free diet is usually crammed with refined sugar (have you ever noticed that card levels are often higher on gluten free products). Bacteria grows quickly and thrives in high sugar environments - totally normal for bacteria, not great for the intestine. This is one thing thay can cause bloating, cramps, upset stomach, reactions, etc.

Try brown rice syrup, coconut sugar, etc. 

Not totally sure, but I imagine it has to do with the lactose sugar reactions as well. 

[GFinDC]

Hi Holly,

Sugars, starches and dairy can cause problems.  If you can avoid the gluten-free baked goods for a while that might help.  It is helpful to follow a really simple whole foods diet at first.  Meat and veggies, nuts, and a little fruit.  The simpler your diet is the easier it is to identify a problem food.  Sometimes the issue is just healing in the gut can take time though.  You could try stevia products like Pyure instead of sugar.  And avoid starches like white potatoes and rice also. 

[John Maron]

I am on a similar path as you - I found I had become lactose intolerant about two years ago after a bad spell of digestion issues. Then, in December, I decided to move to a new city and the stress of this decision brought out some horrible symptoms. I was having a hard time thinking, talking, brain fog, dizziness spells, digestive issues, exhaustion, anxiety. I saw a doctor and was tested for lyme disease, which came back negative, although my liver enzymes were higher than normal (another symptom of celiac disease). After doing some research, I noticed my symptoms were spot on with celiac disease. I went gluten free at the beginning of January and have maintained a strict diet ever since.

I've done plenty of research about celiac disease and have made sure my diet is impeccable - fresh vegetables, meat, fish, some fruits, and I even started fermenting my own vegetables. Within a week my worst symptoms had gone away, within 2-3 weeks some of my other symptoms had cleared. I don't eat packaged gluten free foods like crackers or granola bars. Probiotics have certainly helped as well. I've always been slightly heavy, but since going on this diet I have lost 10-15 lbs and now look like a healthy 25 year old male.

It has been a long road but I feel similar to you - it's been about three months and there are times where I still don't feel good. The digestive problems are bad, but the cognitive/psychological symptoms are what really bother me. Anxiety attacks, depression, lack of sleep, not feeling like myself, these are the hardest symptoms to deal with. I will have 3 or 4 days in a row where I feel almost back to normal and I feel as though I am nearly out of the woods, then some symptom(s) will pop up and I'll want to curl up in a ball, fall asleep and and hope to wake up in a week. 

I recently established my new primary care physician and am being tested for celiac disease and other food allergies. I understand that my test results may be skewed because I have been gluten free for a period of time, but at least the doctor can test for other nutritional deficiencies and is aware that it is likely I have celiac disease. 

I have always believed in the power of positive thinking and I try to take everything in stride. From my research, the path is long and there are many challenges, but I feel like we will become stronger on the other side. It is hard to see the light at the end of the tunnel and it may seem dim or faint at times, but I know we will get there some day.  From what I've read and the people I've talked to, it takes about a year for the system to fully recover - a year seems like a long ways away, but we are about a quarter of the way there. And with the way things are going, I hope that the last 3-4 months are a breeze compared to what you or I have gone through the past 3 months. 

I've found reading through these articles helps too; there are plenty of people that feel similar and can relate to your experience. I've also made deeper connections with friends that had been diagnosed with celiac disease before me and they've been nice enough to give me support along the way. Keep your head up and make sure to think positively.

[Dark Angel]

From my understanding there are a lot of foods that cross react with gluten. If you have been sick for awhile, it can be hard to digest a lot of other foods.   Also if you are on any medications, you might want to check with the pharmacist to see if they are gluten free.  Even so, I have heard it can take up to two years for the small intestine to heal.  What did your doctor recommend?

[GFinDC]

Good responses from the commenters.  Holleychica hasn't been back to the forum since starting this thread on 22-Mar-16, so you may not get a response from her.  If you hover your mouse over a person's username after a few seconds a popup will show some info on the user, like their last visit to the forum.  This isn't real unusual, for someone to start a thread and then never come back to check on replies.  Sometimes younger people do this, sometimes, older people do it, sometimes people with brain fog do it.

It would be nice if people would slide the little red "notify me of replies" button sideways to turn it green when they first start posting threads, before hitting "reply".  Then they would get an email that there was a reply and be able to click a link in the email and find their thread easily.  But lots of things would  be nice in life...