Gluten Free Celiac For 3 Weeks

[BrookeT]

Hi,

I am new to all of this as I was just diagnosed with celiac 3 1/2 weeks ago through a positive blood panel & biopsy result. I have been very diligent about eating gluten-free, (including my vitamins, soaps, lotion, toothpaste and lipstick), but haven't had much improvement and am frustrated and worried. My symptoms are lots of gas, burping, discomfort in the upper center of abdomen just under my chest (indigestion?), bloating, lots of stomach noises, cramps in lower abdomen, diarrhea, and pale yellowish colored small stools which I've had for several years now. I have also in the past few months been having intermittent tingling/slight numbness in my hands and in one foot and a mild headache across my forehead over my eyes and in my temples. I also seem to have a heightened sense of smell & occasional chills. Weird stuff! Has anyone else had any of these strange symptoms? It hasn't been fun! I was previously diagnosed with IBS/anxiety but felt there was more to it. I did a lot of research and talked with my doc about celiac, which at first, she dismissed saying that I would have been diagnosed as a child. Through further research I learned that you can be diagnosed at any age and convinced my doctor to do a celiac blood panel which came back as "highly probable" for celiac. She seemed pretty surprised. I was then referred to a GI doc who diagnosed me through a positive upper endo biopsy. I also suffer with anxiety, which I've had most of my life but has gotten worse over the past few years. I've read that celiac can cause anxiety due to vitamin deficiencies which would make sense to me. I had high hopes for the gluten-free diet thinking it would heal me of my ailments but haven't really seen much in the way of results in these past 3 1/2 weeks. I have no idea how long I've had this for. Does length of recovery depend on how long you've had it and how much damage has been done? Is it possible that I will see results after some more time has passed? My GI doc wants to see in back in 3 months if my symptoms have not improved. He said if they don't, I could also be having an overlap of IBS. I would appreciate any insight. Thanks!

[i-geek]

Give it time. You're trying to reverse years of damage. My headaches went away within the first week, but the GI symptoms took considerably longer (and I'd only been suffering from fully active disease for a few months). For example, the bloating/gas persisted for a few weeks after cutting out gluten and it was at least two months post-gluten-free before I could digest lactose-free dairy again- that was how long it took my gut to heal to that point. I don't know what your diet consists of, but a lot of people (myself included) have trouble with dairy, brassica veggies (broccoli, cabbage, etc.) and nightshades (peppers, tomatoes) at first. I was able to add all of these back to my diet, but not right away. I also had trouble with tapioca flour until my gut healed. Others sometimes have trouble with corn.

[iamgf]

Hi,

I am new to all of this as I was just diagnosed with celiac 3 1/2 weeks ago through a positive blood panel & biopsy result. I have been very diligent about eating gluten-free,(including my vitamins, soaps, lotion and lipstick), but haven't had much improvement and am frustrated and worried. My symptoms are lots of gas, burping, discomfort in the upper center of abdomen just under my chest (indigestion?), bloating, lots of stomach noises, cramps in lower abdomen, diarrhea, and pale yellowish colored small stools which I've had for several years now. I have also in the past few months been having intermittent tingling/slight numbness in my hands and in one foot and a mild headache across my forehead over my eyes and in my temples. I also seem to have a heightened sense of smell & occasional chills. Weird stuff! Has anyone else had any of these strange symptoms? It hasn't been fun! I was previously diagnosed with IBS/anxiety but felt there was more to it. I did a lot of research and talked with my doc about celiac, which at first, she dismissed saying that I would have been diagnosed as a child. Through further research I learned that you can be diagnosed at any age and convinced my doctor to do a celiac blood panel which came back as "highly probable" for celiac. She seemed pretty surprised. I was then referred to a GI doc who diagnosed me through a positive upper endo biopsy. I also suffer with anxiety, which I've had most of my life but has gotten worse over the past few years. I've read that celiac can cause anxiety due to vitamin deficiencies which would make sense to me. I had high hopes for the gluten-free diet thinking it would heal me of my ailments but haven't really seen much in the way of results in these past 3 1/2 weeks. I have no idea how long I've had this for. Does length of recovery depend on how long you've had it and how much damage has been done? Is it possible that I will see results after some more time has passed? My GI doc wants to see in back in 3 months if my symptoms have not improved. He said if they don't, I could also be having an overlap of IBS.

A Must Read: I must suggest a book, it is Open Original Shared Link. It is a new book, with the most current medical knowledge available.

Recovery: All of your symptoms could be related to Celiac. Length of recovery does depend on how much damage your body has to repair. The whole body healing that your body needs is really quite amazing, and until your intestine has time to heal (which requires NO gluten exposure) even digesting gluten-free food will be a challenge. You should start to notice small improvements soon, in 6 months you will feel considerably better, and in 18 months you will be amazed by how great you feel. But the healing takes time, which is something very few doctors understand.

Food: Be sure not to underestimate the potential for other food intolerances. Dairy is notorious for causing inflammation and digestion problems. Removing dairy can be a great boost to your healing process, as can adding in foods that reduce inflammation and promote healing. Foods like ginger and turmeric are wonderful for reducing inflammation. Also be sure to note that your intestine will have trouble digesting high fiber foods for a while. Things like fresh fruits and veggies can be a source of digestive problems. But, you really need to nourish your body with these foods so eat them but consider the following solutions:

1. Make smoothies at home with 6 oz of water, 1 serving of brown rice protein powder (plain or vanilla), a handful of fresh berries, a tiny little sliver of fresh ginger root, a handful of fresh baby spinach (I promise you wont taste it), a small pinch of clover sprouts, a dash of turmeric & a handful of ice. The blender helps break down the food so your body can more easily digest it and make use of the nutrients. Be sure to sip the smoothie slowly, drinking it over the course of about 20 min or more.
   
2. Par baking apples & pears is a great alternative to apple sauce. Just cut the fruit in half, sprinkle with cinnamon and bake at 350 for about 20 min. You don't want to over cook the fruit and lose the nutrients, just cooking them long enough to help break down the fiber is all you need.
   

Cross Contamination: Be sure to evaluate how gluten-free your diet is. Toasting your gluten-free bread in the same toaster used for gluten bread, cooking a gluten-free pancake on the same griddle with gluten pancakes, cleaning kitchen counters with a glutened sponge, sharing water with someone who is eating gluten, kissing someone who just ate gluten ... these are all cross contamination.

If you need more info or help or anything, just let me know.

DeAnna Olson

[tarnalberry]

What have you done to remove contamination?

[cassP]

great info above. and please keep looking on this forum- there's a lot of great information to help you-

for example- lots of other things to avoid for now- maybe dairy, maybe even all grains just for now

also- your numbness/tingling and anxiety sounds like B12 deficiency (VERY COMMON in Celiacs)-> ask your doc to test your B12 & D ... then ask for a copy of the results-

you may need B12 supplements or even Shots.

i would start right now with a sublingual B12 supplement every morning. and that smoothie recipe above sounds like a great idea- plus it's easier to digest- all pure-ed like that.

you're going to get better! dont think that ONLY what the doc says is right: ie: you may have IBS overlapping with Celiac... sure you might-> but all the advice on this forum could totally help you with that- dont rush to any Prescriptions for Steroids

dont worry- you'll get there, it just takes time

[BrookeT]

DeAnna,

Thank you so much for the great advise and support. It has been so overwhelming and challenging!

I have mostly cut out dairy, I use almond milk in place of regular milk for my cereal now but have the occasional slice of cheese. Is it necessary to cut out dairy completely? What about organic yogurt & eggs? Also, should I take a calcium supplement? I am currently taking a b-complex pill but perhaps a need a sublingual b-12 as well? Thanks for the great smoothie recipe. I will definitely try it. Is whey protein powder ok? I think I have been eating a lot of fiber lately: apples, high fiber cereal, whole grain Udi's bread, crackers with flax and seeds, nuts etc. Maybe that's why I'm still having issues?

I've been pretty good about trying to avoid cross-contamination. I've bought my own separate toaster, cutting board and blender and got rid of all of our wooden spoons and utensils.

I think also one of the biggest challenges for me is eating out. My husband & I love going out to eat and now it is a source of frustration & fear for me. It's like you take a chance every time you go out. Traveling, which is another passion of mine is so difficult now. I never know where/what to eat. Such a bummer!

Thanks again for the support and insight!

A Must Read: I must suggest a book, it is Open Original Shared Link. It is a new book, with the most current medical knowledge available.

Recovery: All of your symptoms could be related to Celiac. Length of recovery does depend on how much damage your body has to repair. The whole body healing that your body needs is really quite amazing, and until your intestine has time to heal (which requires NO gluten exposure) even digesting gluten-free food will be a challenge. You should start to notice small improvements soon, in 6 months you will feel considerably better, and in 18 months you will be amazed by how great you feel. But the healing takes time, which is something very few doctors understand.

Food: Be sure not to underestimate the potential for other food intolerances. Dairy is notorious for causing inflammation and digestion problems. Removing dairy can be a great boost to your healing process, as can adding in foods that reduce inflammation and promote healing. Foods like ginger and turmeric are wonderful for reducing inflammation. Also be sure to note that your intestine will have trouble digesting high fiber foods for a while. Things like fresh fruits and veggies can be a source of digestive problems. But, you really need to nourish your body with these foods so eat them but consider the following solutions:

1. Make smoothies at home with 6 oz of water, 1 serving of brown rice protein powder (plain or vanilla), a handful of fresh berries, a tiny little sliver of fresh ginger root, a handful of fresh baby spinach (I promise you wont taste it), a small pinch of clover sprouts, a dash of turmeric & a handful of ice. The blender helps break down the food so your body can more easily digest it and make use of the nutrients. Be sure to sip the smoothie slowly, drinking it over the course of about 20 min or more.
   
2. Par baking apples & pears is a great alternative to apple sauce. Just cut the fruit in half, sprinkle with cinnamon and bake at 350 for about 20 min. You don't want to over cook the fruit and lose the nutrients, just cooking them long enough to help break down the fiber is all you need.
   

Cross Contamination: Be sure to evaluate how gluten-free your diet is. Toasting your gluten-free bread in the same toaster used for gluten bread, cooking a gluten-free pancake on the same griddle with gluten pancakes, cleaning kitchen counters with a glutened sponge, sharing water with someone who is eating gluten, kissing someone who just ate gluten ... these are all cross contamination.

If you need more info or help or anything, just let me know.

DeAnna Olson

[BrookeT]

cassP,

Thanks so much for the advice & support! I will definitely be avoiding any prescriptions if I can.

great info above. and please keep looking on this forum- there's a lot of great information to help you-

for example- lots of other things to avoid for now- maybe dairy, maybe even all grains just for now

also- your numbness/tingling and anxiety sounds like B12 deficiency (VERY COMMON in Celiacs)-> ask your doc to test your B12 & D ... then ask for a copy of the results-

you may need B12 supplements or even Shots.

i would start right now with a sublingual B12 supplement every morning. and that smoothie recipe above sounds like a great idea- plus it's easier to digest- all pure-ed like that.

you're going to get better! dont think that ONLY what the doc says is right: ie: you may have IBS overlapping with Celiac... sure you might-> but all the advice on this forum could totally help you with that- dont rush to any Prescriptions for Steroids

dont worry- you'll get there, it just takes time

[lovegrov]

First, you haven't had time to really heal. I missed 10 weeks of work and wasn't "normal" for 10 months. I was in extremely bad shape, though.

Second, you should also check into bacterial overgrowth or just take a probiotic. There are at least a couple of top celiac doctors who recommend that all of their newly diagnosed patients take probiotics.

richard

[BrookeT]

Richard,

Thanks for the info. It's nice to know I'm not alone. I just started taking proboitics but am not sure how long to take them. Does anyone know how long I should be taking them for?

What were your symptoms if you don't mind me asking?

First, you haven't had time to really heal. I missed 10 weeks of work and wasn't "normal" for 10 months. I was in extremely bad shape, though.

Second, you should also check into bacterial overgrowth or just take a probiotic. There are at least a couple of top celiac doctors who recommend that all of their newly diagnosed patients take probiotics.

richard

[cassP]

Richard,

Thanks for the info. It's nice to know I'm not alone. I just started taking proboitics but am not sure how long to take them. Does anyone know how long I should be taking them for?

What were your symptoms if you don't mind me asking?

i dont think it would hurt to make probiotics a part of your daily routine forever.

also, if you're still not feeling improvement-> you may want to eliminate grains for a bit,... just stick to whole foods like meats/fish, vegtables, fruit, maybe little rice.

maybe eliminate dairy, and be very vigilant at restaurants- there can be a lot of hidden gluten.

if you're still having issues- you may want to research Fructose Malabsorption.

good luck