I knew 2 years ago that I had a gluten sensitivity and thought if I had eliminated it from my diet all would be well. I did not know about all of the complications etc. Unfortunately I find out I never did totally eliminate it and knew nothing about cross contamination.
I lost 25 pounds in 2 months and ended up weighing 100 pounds at a height of 5'4''. Since I did not know what the problem was I unintentionally quit eating almost all foods except rice,potatoes, sweet potatoes,avacado and squash causing malnutrition. My family doctor sent me to the gastro doctor who did a scope and diagnosed me with celiac. I have since eliminated all gluten from my diet and gained 10 pounds.
I have terrible stomach inflamation, painful gas and have to eat every 2 hours even at night or my body goes hypoglycemic. A true nightmare because trying to digest foods is very painful.
I am going to a naturapath who has so far given me vitamins and probiotics. I could tolerate low doses (1/2 capsule) of the vitamins and probiotics. When I tried to take a full capsule I got terrible stomach inflamation and had to stop the probiotics. I try to take the vitamins but some days the pain is too great.
I also have very painful heartburn. I am exhausted from waking up all night to eat since I have to eat at least every 2 hours. After 4am I have to eat every hour until around 8am. Sleep is no fun. My adrenals are exhausted and I am constantly in a state of anxiety. Dealing with all of these issues is very overwhelming.
Now that I am done whining I really would like some help on managing this celiac condition and getting on with living. Any help on managing the problems will be greatly appreciated:
constant need to eat
Also, I now need to introduce new foods to my diet and take the vitamins.
The current foods I am eating:
gluten free bread
I am eating no green vegetables. I tried both 2 tablespoons zuchinni and a piece of lettuce at different times and they both totally inflamed my stomach. Rebuilding has totally overwhelmed me.
Any help or advice on these issues will truly be appreciated.
I have many intolerances, but the SCD (special Carbohydrate Diet) Is working for me. I mention it because I find the food so satisfying that I do not need to eat frequently. This diet includes, meat, vegetables, nut flours, and fruits. www.breakingtheviciouscycle.info Don't be shy on the coconut and olive oils; they help me keep full longer and my doctors say to have about 1 tbsp. a meal. I hope you usually cook from scratch.
I have exhausted adrenals and have taken an herbal formula by Metagenics to help with it. You might ask your doctor about adrenal support. I have used other supplements for it with success.
Do you tolerate corn? Do you tolerate your supplements? You need to check them carefully for foods that you do not tolerate. I try to find the simplest supplements available, but it takes me a lot of work. It is better to read the ingredients carefully before ordering, than to throw them in the compost pile once they arrive.
I appreciate what your doing using a natural doctor and trying to use diet and supplements to heal. Have your nutrient levels been checked? I guess they have as you said you are mal-nourished. You do need to search for more foods you can eat. You need to be sure your nutrient levels go up. I take a multi-vitamin, vitamin B supplement that my Functional Medicine Nurse says are usually needed for celiac. Yes, probiotic is good. I take Restore pro-biotic that is just the organism powder. I take more than these, but these are the ones my doctors recommend for everyone with celiac.
How long have you known you had symptoms? I had 30+ years of symptoms. I got so low that I would fall asleep between words while giving a spelling test! I am 18 months gluten free and have some energy and a clear mind! I hope we will one day be hearing your success story!
Just wanted to add that 1) you need to check your supplements carefully to make sure they are gluten-free, and 2) you may want to try a digestive enzyme. While you're healing your body may not be able to break down your food so that it is too hard for your body to digest/absorb much of it. Digestive enzymes can be very helpful with this.
Also, to echo what desparateLady said, an adrenal support supplement can help your adrenal glands. I take both an adrenal support and a thyroid support - Celiac, the healing process, general stress - all can be hard on both the thyroid and the adrenals.
I will definitely look into the adrenal and thyroid supplements. I got a bottle of Relora but have not tried it. What do you use?
I am also interested in the digestive enzymes. Do they inflame your stomach? Which ones do you take?
I believe I have had active gluten problems for 2 years. I had shingles 2 years ago, after that everything got wacky. My Dr believes the gluten caused the shingles. I had been going to an acupuncturist for 5 years. After the shingles i started having a lot of D. He had no knowledge of gluten allergies nor did I. He treated the D but nothing worked. He suggested I might have an allergy. I decided to remove gluten, but I knew nothing about cc and also ate a lot of oats that I now know contained gluten. I did go on the SCD diet, but once I pulled the rice out I ended up losing 25 pounds in 2 months and became very weak. I went on the IBS diet with rice and slowly started to put the weight back on. I have now gained 10 pounds an am up to 115.
So far I can't tolerate any green vegtables except green beans. My diet is so limited. I am trying to introduce new foods but have terrible nausea,gas,sromach inflamation and GERD. It is very debilitating. I feel like my life is slipping away.
I am a digital artist and video producer. The nausea is so bad I can only sit at the computer for very short periods of time.It really is affecting my business. The anxiety is overwhelming.
My Naturapath gave me some very good multivitamins. Nothing in them that should trigger anything. I was fine on them for 1 week. He had me up the dosage from 1 to 2 and everything flared up. Terrible stomach inflamation etc. I know I need the vitamins to heal. I am going to try emptying 1/2 a capsule in water and see if I can tolerate them that way.
I can't seem to find the path that will bring balance and stability to my body. It seems I go 1 step forward then it goes sliding back.
I have studied herbs my whole life and walked a very natural path. It seems there should be some way to stabalize this illness.
I appreciate everyone in this forum's help and I hope we are all Blessed with vibrant good health.
Cynthia.......I was in the same boat as you 9 years ago. I was down to 94 pounds at 5' 4" and suffering from advanced malnutrition. It is going to take a long time for you to heal and feel better but a few tips to help you get on the road to recovery........stop taking all supplements, except the probiotics and then add some digestive enzymes to the mix. The enzymes are to be taken with meals only and the one I use is Digest Gold by Enzymedica. They are gluten free and help us skinny Celiacs digest our food so we can heal.
When the small intestine is damaged due to Celiac, messages that are sent from the small intestine to your pancreas, calling for digestive enzymes the pancreas produces, can no longer be made. So, you have trouble digesting your food because the enzymes aren't there that you need. When you have trouble digesting your food, your stomach keeps pumping out acid to try and break the food down and cannot. Taking these should help with that and they should not bother your gut unless you take them on an empty stomach...which you won't be.
You need to be seen by a regular MD and have your blood sugar tested for diabetes, if you need to wake up in the middle of the night to eat or you will go hypoglycemic. That is not normal. I was having bouts of hypoglycemia also and passed out on 2 occasions BUT I never had problems overnight from going that long without eating.
If you need to take supplements after having blood work to test for deficiencies, then try and take them sublingually.....under the tongue. They dissolve fast and go directly into your blood stream and avoid the gut. A good doctor may suggest shots for deficiencies but if you are this unsteady, you should be under, at least somewhat, their care.
You need protein, protein and more protein because that is the nutrient that rebuilds your body. Eat small meals more often and snack as much as you like or can tolerate.
Maybe try a lactose free protein shake because they go down easily and you can ingest a lot of calories if you drink them.
It took me 6 months to gain enough weight that I went up a pant size. Just be patient because you have to be. All of your symptoms will go away, with time, but it won't be overnight. Get plenty of rest, if you can, and get your blood sugar tested and taken care of. You should also be able to add back in foods, over time, as you heal. Go heavy on the gluten-free bread because that really will pack weight on but include protein at every meal you eat. Do not worry....you will be fine! I recovered and so can you.
Thanks you so mch for the links. I really appreciate them.
You saved my life. I was so depressed and exhausted from not sleeping. I am so grateful you took the time to share all of that valuable info and experience.
I have tried everything to stop the stomach acid. Now I understand. Things finally make sense.
I did have a blood test recently and my DR said there is no diabetes so I am relieved about that. After I read your post I did imediately eat some chicken and took a digestive enzyeme. I bought them a few weeks ago but had not taken any.
Tomorrow I will look into the protein shakes. I know it will take some time to heal but you have given me hope. It is so difficult to find anything on the web with info for underweight people.
Heartfelt Gratitude to both of you and all the wonderful people on the forum who take the time to share their path.
Cynthia.....I know how it feels to be dying slowly and losing weight to the point where you seriously wonder if you'll make it. When I hit the wall with Celiac, I lost 7 pounds in 5 days. That will get your attention! You are correct...everything is geared towards overweight and the obese so people have very little understanding of what it's like to be emaciated and trying hard to gain weight. Being malnourished is no joke but I assure you, it can be reversed. I have topped out at 110-112 pounds but I also go to the gym now and work out with weights to try and reverse the osteoporosis I have because of Celiac. Between the diet I eat and the exercise I do, it's still hard to gain any more than that. But I have fat where I never had it before.....like on the pads of your hands and butt, and around my ribs. These are the last places you lose fat when you are suffering from advanced malnutrition. I may not have gained a ton of weight but I am more filled out than before and look normal now...not like a skeleton.
I am happy that you do not have diabetes and will tell you that I was having blood sugar issues also. I was hypoglycemic and did pass out twice. It was horrible. The good news is that it has all melted away and I do not have that problem anymore because I am healed and absorbing...at least much better than I was 9 years ago. I would suggest at least 6 small meals per day. Do not overload your system with large meals. Start grazing, if you do not do that already and eat small amounts continually all day. Have a snack before bed to help carry you through the night and preferably, protein related. Do you like eggs? They are the perfect protein!
http://www.menshealt...ect_Protein.php This website is geared to men but nutrition is nutrition when it comes to building muscle. It will help steer you in the right direction as far as protein is concerned. If you tolerate the gluten-free bread well, eat it liberally. gluten-free bread is fattening and it worked for me. I would try and make sure that the bread is done in a dedicated facility because you obviously have a bad case of Celiac and you'll be wanting to eat a lot of bread. Many are so they are easy to find.
Above all, be patient because you will not start gaining overnight. As long as your weight stabilizes for now, gaining will come with time. Remember, try and drink fattening drinks also. That helps!
Again,my heartfelt appreciation for your help and info.
After I read you post, I ate a big plate of chicken with some rice and took a digestive enzyme that I had bought but had been been afraid to try. I am so happy, I am actually tolerating the enzyme. What a gift. I went to the health food store today and bought a protein shake that is gluten and lactose free. Just brown rice with vanilla and a bit of Stivia. I will try that tomorrow. I truly hope I can tolerate it as it has 16 grams of protein per serving. that would be big help.
I have had debilitating acid reflux from all of the stomach acid. Did you have the acid reflux? If so, did it go away when you worked with the enzymes? I don't like to take antacids but this morning I took 1 Gavascon at 5am. The rest of the day I took the enzymes with meals and had no acid reflux the entire day. What a relief.
You have truly given me hope and that hope gives a great strength. That is a great gift to give someone. I thank you.
I will check out the bodybuilding info tomorrow. I have always done weights but in the last 2 months I have not been able to. Now I believe I will be able to go back to them.
I would not start any exercise at the moment, aside from walking in the fresh air. I would wait until you are feeling better. Don't try and do too many things at once when you are recovering from Celiac.
I do not have, or have had in the past, any acid reflux problems, which is really a miracle. I did eat well pre-diagnosis and didn't eat fast food or other fatty foods that will generally aggravate your gut and cause reflux.
The only mistake I made was to eat all that whole wheat crap that is supposed to be so good for you.......NOT! Nearly killed me. However, I was watching a program on TV, Dr. Oz, which was unusual because I am not
a huge fan of Dr. Oz. But they caught my attention when they were talking about acid reflux because my mother has acid reflux and it is a very common ailment today. My mother also has a problem with gluten but she chooses to stay in denial but that's a story for another day.
Dr. Oz recommended a natural remedy that supposedly works really well for acid reflux. It's called manuka honey and it's from New Zealand. Manuka is the type of honey it is and not a brand name. You may want to google it and read up as it might be something to try. All I know is that many celiacs report their acid reflux gets much better or goes away on the gluten free diet but it takes awhile.
I'm glad the enzymes seem to be helping. When you eat, try and relax and eat slowly. Having anxiety about food, which can happen when food is making you sick, can aggravate the whole process. Take your enzyme with each larger meal and just enjoy the food. Make sure anything that gets past your lips is gluten-free so the healing can continue. You have to be strict. Rice and chicken are good foods for upset and angry stomachs so if it agrees with you, eat it often but try and include some well cooked veggies. You may be able to tolerate them if you cook them longer. Not optimal but veggies have nutrients that you need. The enzymes should help with the reflux because it will help break your food down better. Sounds like you are doing a bit better already which is great because you have to eat!
Hi! Congratulations on getting your diagnosis. Knowing is everything. After I was diagnosed, I went to Mayo Clinic and saw Dr. Murray. If it helps, the only thing that they insisted I supplement was Vitamin-D. Although my bone density was below average, they did not insist on a calcium supplement because they felt that with Vitamin D I would naturally get the calcium I need from the foods I am eating.
I too lost weight. I am 6'0 and dropped to 137 pounds. I am now between 165-170. I gained it within a year by eating 2600-3000 calories per day. If you have an iPhone I would encourage you to download the ShopWell app (free) and MyFitnessPal (Free) to scan barcodes in the grocery to detect gluten in a pinch as well as set up a weight goal and track the foods you are eating early on to know and track what nutrients you are getting from what foods and even track them cumulatively. I relied on MyFitnessPal to restore my weight to a healthier level.
I was very anxious, much like you. I was also depressed. I was so thin that sleeping was difficult because if I laid in one position more than 15 minutes it would begin to hurt. My back hurt, it was hard to swallow sometimes, my vision was slightly blurred at times, and I hurt all over without rhyme or reason. My heart would occasionally race at night. My skin in some places felt like it was on fire.
All of this was a year ago. I'm still trying to shake a thing or two but have made enormous strides forward, thank God. I didn't really believe that changing my diet could fix so much but had faith and did it anyway. So glad I did. So glad people on this website were encouraging.
You will be fine. You will do the same thing. You will learn patience in a way you never dreamed because it will take time and plenty of it. Try to busy yourself too. The distraction is great. Force yourself out of the house even when you don't feel like it. Clean your house even when you don't feel like it. Get all dressed up once and awhile even if you don't feel like it. It will help so much. I wasted SO much time beating myself up and being un-motivated. I had to force myself for awhile before I started getting back to living a life and getting back to focusing on others instead of myself. I still have a way to go but am off to a great start.
Don't over think the supplements. Don't over think the food. You absolutely cannot have gluten. You may or may not be able to have lactose. You may learn you have other intolerances along the way but you may not. So until you can definitely make those determinations for sure, eat up! Set a weight goal and eat your daily calorie goal without fail. There will be days where you think you've done a "good job" of eating when in actuality, you've not even came close to consuming the amount of calories you need. MyFitnessPal will show you that. It will help you to head back to the kitchen to cram something else down when ordinarily you may quit eating for the day. It will help get your body used to eating more again over time.
Good luck! Let us know how we can help you. You will get used to the gluten-free lifestyle and adapt better than you can imagine right now.
Thanks to everyone for the help. it does help so much to be part of a community like this.
I sent your posts to my naturapath. He was very grateful for the info. Amazing, a doctor with humility.
It did really help him to update my treatment plan. The digestive enzymes are definitely helping. Sometimes I think for doctors it is difficult to really know what is going on in our bodies since the gluten causes such diverse problems.
My body still can't tolerate green vegetables so i am not pushing it right now. I got a nice protein shake that I think iI can tolerate so that will help with the protein.
Thanks so much for sharing with me. I understand about the patience. I have worked a lot on patience in my lifetime and thought I was doing ok with it. I direct and produce some indie music videos and working with musicians definitely requires patience. Now what I understand is that having patience with oneself is the big challenge.
I have no problem making choices to stay away from gluten. I don't crave it and thought I was gluten free for the last year. I was very naive about the problems it causes and had no clue about cross contamination. Finding any food I can tolerate right now is the biggest problem.
I am so glad you are better. I know you have developed a lot of courage dealing with the pain and anxiety. I think along with the patience, courage and compassion for both ourselves and others help us get through this and is part of our learning process. I think it is important to come through this condition stronger,healthier and better human beings then before we were diagnosed. In a way it is how we defeat the illness and it does not steal our souls. I think you are doing well.
We are all warriors in this struggle. We are laying the pathways that will help others to win their battles so I believe there is a purpose to our struggle.
It is a privilege to me to get to know such strong people in this community.
Just a note - I swing hypoglycemic when my adrenals and thyroid are off. Eating regularly (protein+fiber you can handle) helps stabilize glucose andvmakesxadrenals happy. Do NOT skip a meal. Next up is thyroid - you may have something going on there. If you continue to have issues have them test free t3/t4, reverse t3 and you want them all midrange. When my t3 gets too low OR too high I get hypoglycemic. Thrilling.
As far as the reflux goes...I had it for years thanks to gluten. No pills meds worked....so I started using visualization to tell my body to let the pain go and stop making acid. I never thought it would work, but it did. I got very good at it - could do it in a meeting. There are lots if links out there on the web about how to do this for high blood pressure, etc. give it a whirl. I still use it because when I get glutened....yeah, reflux.
Apparently there is nothing that cannot happen today. ~ Mark Twain
Probable Endometriosis, in remission from childbirth since 2002. Hashimoto's DX 2005. Gluten-Free since 6/2011. DH (and therefore Celiac) dx from ND. Responsive to iodine withdrawal for DH (see quote, above). Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!