Gluten-free For 4 Months, But Some Symptoms/complications On The Rise

[Silliest of Yaks]

When I first went gluten free after my celiac diagnosis, I was "cautiously optimistic" (as I told my family and friends) that it was going to be life-changing for me. For years I had mood swings, fatigue, IBS-D symptoms, got sick all the time, and lots of headaches, including the occasional hormonally-triggered migraine. For the first two months, I felt like all of these symptoms were changing for the better. I realized for the first time in my adult life what it felt like not to be tired all the time - I could deal with this! About 2 months into being gluten-free, everything kind of started sucking again. The turnaround in symptoms followed a ruptured ovarian cyst, not that it's necessarily cause-and-effect. Here's what's been changing:

- Frequent headaches again and more migraines, including one straight week of them. They're so persistent that I had to take a leave of absence from work

- Other neurological oddities like ringing in my ears, muscle spasms, lots of little twitches, feeling phantom bugs on my limbs, sensitivity to light, and sometimes seeing a dark magenta circle right in the middle of my field of vision - this is all new to me, but seems to correspond with headaches and occur mostly at night

- Fatigue, irritability, fogginess, and being easily overwhelmed - nothing new to me but most certainly there

- My bowels are getting increasingly finicky. I have a lot of upper abdominal pain, bloating, D, have to go at least 3 times before I leave the house in the AM. Sometimes there is a white powdery cloudiness that comes out with the stools, and I'm not sure what that is - puss?

- Frequent cloudiness in my urine without any other UTI symptoms, sometimes pain where I imagine my kidneys to be but not sure what to make of that

- Mouth ulcerations

- Achy joints, especially at night, and a sore back where it hurts to breathe about a mile into a run (not far for me)

- Elevated blood pressure - today it's 140/111 for example, but historically it's always run about 110/60

- Elevated body temperature - It's within normal range, but I'm used to being in the low 97's F

Now I don't know what to think of any of this - clearly my body is still healing, but why am I having new symptoms and others worse than usual? Especially since the turnaround followed other physical trauma (the ruptured cyst), I'm concerned that there may be more to the autoimmune puzzle. A recent antibody check indicates I've been doing well with the gluten-free diet. I recently cut out dairy, and the only meds I'm on are birth control and mood stabilizers that I have been on before without issue. I was screened for the usual deficiencies and everything looked okay. I know I have a body in transition, so maybe it's just working out the kinks?

I am in communication with my doctors, and seeing a neurologist and my GI doctor in the upcoming week, but I am wondering what other people's experiences have been with recovery, if it's "normal" to have some things get worse instead of better post diet-change. I'm 25 and on disability - and just so frustrated with not knowing why I feel this way. What have your experiences been? Does this sound familiar to any of you??

[Mtndog]

It definitely takes a long time to heal- your body could be getting rid of toxins (since gluten was toxic to you). I remember someone saying it took them 2 years to fully recover.

There are other possibilities. Sometimes, once gluten is eliminated, you realize you are intolerant to other types of food (dairy, legumes including soy, corn). You could try eliminating other foods that are "suspect" to see what happens.

Definitely keep your GI in the loop. Mine was incredibly helpful.

[SGWhiskers]

Make sure your doctor checks your vitamin levels. If you are low in certain vitamins/minerals it can cause neurologic problems.

Good luck. I hope you feel much better.

SGWhiskers

[WW340]

Try not to get too discouraged. I can relate to the headaches and fatigue problems.

I felt great in the first couple of months and then I developed terrible headaches. I had not had migraines for years, and suddenly I was having them almost every day. Unfortunately, they lasted for a couple of months, and now I rarely ever have one again. I think it was somehow related to the gluten withdrawl.

I was suddenly hit with fatigue at about the 8th month gluten free. I had been so happy to finally have some energy, and then I was devastated to start feeling so bad again. My vitamin levels were looked at again and it was determined that while my Vit B12 fell in the normal level, it was just barely normal. This was in spite of taking B12 supplements, so I was started on shots, and now the nasal spray. My energy really improved almost immediately upon starting the shots.

I have since had shingles twice, and both times, my energy dropped to nothing. My GI doc says that with any illness, it just takes my body a little longer to heal and requires more rest. I think maybe health is a little more fragile until a few years of healing have taken place.

It is reasonable to think the ruptured cyst certainly could have been a set back for you.

[ang1e0251]

You might want to check your birth control. I found that one type I took caused a reaction. Sorry I don't remember its name. I'm back on Nuvaring now & do fine with it.

[Amber M]

Try not to get too discouraged. I can relate to the headaches and fatigue problems.

I felt great in the first couple of months and then I developed terrible headaches. I had not had migraines for years, and suddenly I was having them almost every day. Unfortunately, they lasted for a couple of months, and now I rarely ever have one again. I think it was somehow related to the gluten withdrawl.

I was suddenly hit with fatigue at about the 8th month gluten free. I had been so happy to finally have some energy, and then I was devastated to start feeling so bad again. My vitamin levels were looked at again and it was determined that while my Vit B12 fell in the normal level, it was just barely normal. This was in spite of taking B12 supplements, so I was started on shots, and now the nasal spray. My energy really improved almost immediately upon starting the shots.

I have since had shingles twice, and both times, my energy dropped to nothing. My GI doc says that with any illness, it just takes my body a little longer to heal and requires more rest. I think maybe health is a little more fragile until a few years of healing have taken place.

It is reasonable to think the ruptured cyst certainly could have been a set back for you.

I have been gluten free for 3 months now and felt better at first, now I have still a lot of neurological symptoms and intollerances to many other foods. I get panic-ed that I have eaten gluten even when I am sure I haven't. I had the blood test after I had gone gluten free twice and reintroducted twice, but was gluten free about 2 weeks and then gluten for 3 days, then gluten free for 4 days. The blood test came back negative. Then I was gluten free for over 2 months by the time I finally got scheduled for the Biopsy. It also came back negative. All I know is I get much sicker if I eat the stuff. I am taking many supplements right now including digestive enymes but here's another allergy to go along with the many I seem to have: vit.B 12!!! I tried the pills many times, break out it a almost pustule rash! I wouldn't dare to have the shots! What can I do? Amber M. (Maybe I am gluten intollerant?)

[WW340]

I have been gluten free for 3 months now and felt better at first, now I have still a lot of neurological symptoms and intollerances to many other foods. I get panic-ed that I have eaten gluten even when I am sure I haven't. I had the blood test after I had gone gluten free twice and reintroducted twice, but was gluten free about 2 weeks and then gluten for 3 days, then gluten free for 4 days. The blood test came back negative. Then I was gluten free for over 2 months by the time I finally got scheduled for the Biopsy. It also came back negative. All I know is I get much sicker if I eat the stuff. I am taking many supplements right now including digestive enymes but here's another allergy to go along with the many I seem to have: vit.B 12!!! I tried the pills many times, break out it a almost pustule rash! I wouldn't dare to have the shots! What can I do? Amber M. (Maybe I am gluten intollerant?)

Amber, it is rare for someone to be allergic to the actual vit. B12. It is more likely that you are allergic to something combined with it to make it into a pill. Have you tried any sublingual formulations? Also, It might be a good idea to have your doctor run a B 12 level on you. B 12 definciency can certainly cause neurologic symptoms, even when it is in the normal range, but a low normal.

An allergist can test you and desensitize you to the vitamin if you are actually allergic to it.

[Amber M]

Amber, it is rare for someone to be allergic to the actual vit. B12. It is more likely that you are allergic to something combined with it to make it into a pill. Have you tried any sublingual formulations? Also, It might be a good idea to have your doctor run a B 12 level on you. B 12 definciency can certainly cause neurologic symptoms, even when it is in the normal range, but a low normal.

An allergist can test you and desensitize you to the vitamin if you are actually allergic to it.

Thanks for your response. I will mention this to my Allergist. I tried a diff. brand over 6 years ago and the same thing happened. This new brand was soy free, wheat free and all of the allergy stuff free, but perhaps it was the binders. I will look into this. The funniest thing was I was reading the foods high in Vit.B12 and Clams were the highest in the vit. I am extremly allergic to clams! I wondered it that was a coencidence!? I will look into the sublingual formulations too. Thanks

[veggienft]

Thanks for your response. I will mention this to my Allergist. I tried a diff. brand over 6 years ago and the same thing happened. This new brand was soy free, wheat free and all of the allergy stuff free, but perhaps it was the binders. I will look into this. The funniest thing was I was reading the foods high in Vit.B12 and Clams were the highest in the vit. I am extremly allergic to clams! I wondered it that was a coencidence!? I will look into the sublingual formulations too. Thanks

If you are allergic to clams it's a good bet you're allergic to iodine. If you are taking vitamin and mineral tablets to get your B12, they could have iodine in them. Check the label. Most of us live so close to the ocean that we don't need iodine supplements anyway.

Also, because of my candidiasis, I react to dyes of all sorts. Iodine is a dye. Most pills and tablets have dye coatings on them. I have to rinse those coatings off before swallowing the medicine inside. Check into it.

Good luck.

..

[Amber M]

If you are allergic to clams it's a good bet you're allergic to iodine. If you are taking vitamin and mineral tablets to get your B12, they could have iodine in them. Check the label. Most of us live so close to the ocean that we don't need iodine supplements anyway.

Also, because of my candidiasis, I react to dyes of all sorts. Iodine is a dye. Most pills and tablets have dye coatings on them. I have to rinse those coatings off before swallowing the medicine inside. Check into it.

Good luck.

..

Heres the ingredient list: No Gluten, yeast, wheat, milk or derivatives, lactose, sugar, preservatives, soy, artificial color, artificial flavor or soduim. Other ingredients: dicalium phosphate, mannitol, cellulose (plant origin), croscarmemlose, vegetable stearic acid, vegetable magnesium stearate.

Is any of these iodine in desguise? Thanks, Amber

[veggienft]

Heres the ingredient list: No Gluten, yeast, wheat, milk or derivatives, lactose, sugar, preservatives, soy, artificial color, artificial flavor or soduim. Other ingredients: dicalium phosphate, mannitol, cellulose (plant origin), croscarmemlose, vegetable stearic acid, vegetable magnesium stearate.

Is any of these iodine in desguise? Thanks, Amber

Nope, I can't find anything. I found a site claiming dicalcium phosphate can be contaminated with mined minerals, but it made other charges which were pretty whack. Any vitamins could be contaminated with things not on the label. Apparently the croscarmelose is amine reactive, so an imbalanced system could theoretically react .......theoretically.

Maybe you're allergic to B12.....

Open Original Shared Link

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Itching, rash, transitory Open Original Shared Link, and Open Original Shared Link have been reported. Vitamin B12 and pyridoxine has been associated with cases of rosacea fulminans, characterized by intense Open Original Shared Link with nodules, papules, and pustules. Symptoms may persist for up to four months after the supplement is stopped, and may require treatment with systemic corticosteroids and topical therapy.

Diarrhea has been reported.

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[Amber M]

Nope, I can't find anything. I found a site claiming dicalcium phosphate can be contaminated with mined minerals, but it made other charges which were pretty whack. Any vitamins could be contaminated with things not on the label. Apparently the croscarmelose is amine reactive, so an imbalanced system could theoretically react .......theoretically.

Maybe you're allergic to B12.....

Open Original Shared Link

---------------------------------------------------------------------

Itching, rash, transitory Open Original Shared Link, and Open Original Shared Link have been reported. Vitamin B12 and pyridoxine has been associated with cases of rosacea fulminans, characterized by intense Open Original Shared Link with nodules, papules, and pustules. Symptoms may persist for up to four months after the supplement is stopped, and may require treatment with systemic corticosteroids and topical therapy.

Diarrhea has been reported.

---------------------------------------------------------------------

..

Thanks so much for your research. I am going to try the sublingual anyway. I discovered my muti vitimin has 60 mcg of vit. B 12 and I have never broke out from them. When I started the vit. B 12 supplement, I started at 100 mcg and progresively went up. By the time I had 400 mcg at lunch and then again at supper and the next day 500 mcg at lunch with the plan of 500 at supper is when I broke out. My overall plan was to take 1000mcg a day. Perhaps it was just too much that put me over the edge? I'll post my results after the sublingual. Thanks again. Amber

[harryc2022]

When I first went gluten free after my celiac diagnosis, I was "cautiously optimistic" (as I told my family and friends) that it was going to be life-changing for me. For years I had mood swings, fatigue, IBS-D symptoms, got sick all the time, and lots of headaches, including the occasional hormonally-triggered migraine. For the first two months, I felt like all of these symptoms were changing for the better. I realized for the first time in my adult life what it felt like not to be tired all the time - I could deal with this! About 2 months into being gluten-free, everything kind of started sucking again.

I'm in the same boat you are. I started the diet on August 6th. Around the 6 week mark I was very excited to feel normal again. Around 9-10 weeks, things began to deteriorate gradually. I'm not back down to where I was before but my symptoms are steadily worsening.

Things that are back that were gone:

Anxiety/Depression - I had quit taking medicine

Joint pain - morning stiffness and soreness is hands/feet/elbows/knees was totally gone

Fatigue - I felt like my old self again with plenty of energy

All the symptoms are back and I'm sad. I'm so confused I don't know what to do next. Maybe I should call the Dr. or maybe I should eat only bananas and rice cakes for a few weeks.

My house is totally gluten free. I never eat out anymore and we read every label on things we buy. Any questionable foods, I just don't eat them. I do eat a little dairy in things my wife cooks to make it easier on her but I'm not drinking cow's milk or eating yogurt like I used to. I've been taking a multivitamin that claims to be gluten-free and any medicine I take has been cleared by the pharmacy as gluten-free also.

Harry

[Amber M]

I'm in the same boat you are. I started the diet on August 6th. Around the 6 week mark I was very excited to feel normal again. Around 9-10 weeks, things began to deteriorate gradually. I'm not back down to where I was before but my symptoms are steadily worsening.

Things that are back that were gone:

Anxiety/Depression - I had quit taking medicine

Joint pain - morning stiffness and soreness is hands/feet/elbows/knees was totally gone

Fatigue - I felt like my old self again with plenty of energy

All the symptoms are back and I'm sad. I'm so confused I don't know what to do next. Maybe I should call the Dr. or maybe I should eat only bananas and rice cakes for a few weeks.

My house is totally gluten free. I never eat out anymore and we read every label on things we buy. Any questionable foods, I just don't eat them. I do eat a little dairy in things my wife cooks to make it easier on her but I'm not drinking cow's milk or eating yogurt like I used to. I've been taking a multivitamin that claims to be gluten-free and any medicine I take has been cleared by the pharmacy as gluten-free also.

Harry

Harry, I had the same thing happen, and was sure I was not eating gluten. It sounds like you are not eating it either. I found I had had trace amounts in some things after all a few times. When it said "wheat free" I discovered it could still have barley, rye or other sources of hidden gluten. It has to say "gluten free", then can still have trace-so many parts per million thing. I found it best to stay with fresh foods and prepare my own stuff with pure spices, etc. Also, changing deoderant, etc. I belive it can penetrate the skin.

But also, I became intolorant to many other foods in the mean time, after feeling better, then sick again. Soy has been an allergy for years, and I was hung up on the "no gluten" and forgot to check the soy sometimes. My allergist says I may be able to tollerate some of the things I can't right now, later, after healing takes place. It takes diff. amounts of time depending on the damage. You will heal, but you may have to give up more things for now. Stay simple. I can't do most of the gluten free breads yet. " Pamala's pancake mix" is about the only flour I can digest. (makes tons of stuff and is gooood) "By George" english muffins are pretty mild too.

You could be getting trace amounts or new intolorances. Hang in there. I have been gluten free for only going on 5 months myself. Hope you feel better!

[lizard00]

First, welcome to the new folks on the forum! Glad you have found us.

Were you diagnosed with Celiac? Sometimes, gluten intolerance is caused by an underlying condition. In fact, we've got a few folks around who were gluten intolerant as a secondary reaction to an unknown illness. Once the illness was addressed, they were able to tolerate gluten again. So, you may need to go back to the doctor to explore other possibilities.

OR... you could be accidentally ingesting gluten OR... you have other intolerances.

I felt great for a few weeks after going on the diet, too. Then I felt like I took a few steps back. I think part of it IS detoxing, and the learning curve makes up the other part. I ingested gluten here and there by accident, simply because I also thought that wheat free was safe to eat. I also had a ruptured ovarian cyst in Jan of this year. I ended up going to the ER because I thought my insides were on fire. In fact, my GP sent me there because she thought I might have had an obstructed bowel or something because of my symptoms. I started feeling better within a day or so, but I had a pretty rough two weeks. I think my body was already working really hard trying to figure out what in heck was going on with the Celiac situation, and then throw something else in there to try to work out.

I am almost at a year being gluten-free, and I feel sooo much better compared to last year. I can't believe the things that I can do now that would've totally wiped me out a year ago. So, if you know that gluten is your problem, stick with it. Give it another 6 weeks, anyway. If gluten is your problem, you didn't get sick over night. You won't heal overnight either. I know, what a bummer!

[GlutenWrangler]

Your situation sounds eerily similar to mine. I was 21 when I was diagnosed. I'm 24 now. When I first started the diet, I initially saw some great improvements. As time went on, things started to go downhill. The improvements stopped, my symptoms worsened, I became sensitive to almost everything I ate, I started dropping weight, and my health deteriorated. It got to the point where I could only eat every other day. After numerous unsuccessful attempts at trying to get admitted into a hospital, even though I was only 100 pounds, I was finally admitted into a great Boston hospital. They couldn't figure out what was wrong with me, but because I couldn't sustain my nutritional status, I was put on IV nutrition. That was 17 months ago, and unfortunately I'm still on the IV. I still haven't been able to get an answer about what's wrong with me, but I'm still trying. I'm also on disability, but I hope I'll be able to get off of it someday.

My case is pretty extreme, I know. And I'm sure you don't have to worry about ending up like me. You might just be going through a detox process, and you're feeling worse before you feel better. On the other hand, you might just have other food sensitivities. An elimination diet might be good for you to identify any problem foods. Other than that, I think seeing a neurologist is a great idea for your migraines. I sincerely hope you start to feel better soon. Good luck,

-Brian

[harryc2022]

First, welcome to the new folks on the forum! Glad you have found us.

Were you diagnosed with Celiac?

OR... you could be accidentally ingesting gluten OR... you have other intolerances.

I am almost at a year being gluten-free, and I feel sooo much better compared to last year. I can't believe the things that I can do now that would've totally wiped me out a year ago. So, if you know that gluten is your problem, stick with it. Give it another 6 weeks, anyway. If gluten is your problem, you didn't get sick over night. You won't heal overnight either. I know, what a bummer!

Thanks for the welcome. Sorry I didn't really give any background. I have a celiac diagnosis. My blood work was positive, IGa and TTG were very high. If the top of the scale for positive TTG was 20, my score was 40. The Dr. could tell I was positive due to obvious flattened villi on my endoscopy before the lab results were even back. My gene test is positive, I should know which one for sure but I think it was DQ8 (there's an 8 in the somewhere at least).

My GI symptoms weren't noticeable to me until I had a positive blood test. It was my wife who figured out through reading a book on celiac that I had it. I had gone 18 months to 7 different doctors and they had no idea what was wrong with me. She told me I should have a the TTG so I went and asked my primary doc for the test. He said there was no way I could have that because I'd lose weight and I'd gained from 152 to 178 in a year. He agreed to do the test anyway and when the results came back, my journey started.

I've been eating a lot of corn chips and tostadas that do not say 'gluten free' but don't list any wheat barley or rye ingredients. I've been eating a little cheese too.

So are you saying that other food intolerances can cause fatigue and 'mental' issues. I thought my small daily consumption may just make my stomach feel bad?

Harry

[Amber M]

Thanks for the welcome. Sorry I didn't really give any background. I have a celiac diagnosis. My blood work was positive, IGa and TTG were very high. If the top of the scale for positive TTG was 20, my score was 40. The Dr. could tell I was positive due to obvious flattened villi on my endoscopy before the lab results were even back. My gene test is positive, I should know which one for sure but I think it was DQ8 (there's an 8 in the somewhere at least).

My GI symptoms weren't noticeable to me until I had a positive blood test. It was my wife who figured out through reading a book on celiac that I had it. I had gone 18 months to 7 different doctors and they had no idea what was wrong with me. She told me I should have a the TTG so I went and asked my primary doc for the test. He said there was no way I could have that because I'd lose weight and I'd gained from 152 to 178 in a year. He agreed to do the test anyway and when the results came back, my journey started.

I've been eating a lot of corn chips and tostadas that do not say 'gluten free' but don't list any wheat barley or rye ingredients. I've been eating a little cheese too.

So are you saying that other food intolerances can cause fatigue and 'mental' issues. I thought my small daily consumption may just make my stomach feel bad?

Harry

If you have truly been a year with no gluten, I would think you could have healed alot by now, but some adults take 2 or 3 years to heal and a small amount don't heal from what I understand. You can have other intorerances in the mean time, or have other food allergies as well. I am allergic to soy and other things besides wheat-gluten. Now if I slip and eat soy, it sends me into what appears to be a wheat reaction, with the digestive as well as migraines, foggyness, numbness, tingling, muscle spasms and twitching on...on...on. So, I don't know what other than agravating the already exsisting problem as well as the individual allergy to soy is really happening. Thats my story. On the corn chips-taco chips, I noticed although some of them say gluten free, there is an allergy statement that says,"machines cleaned in between, but, not made in a gluten free environment, could have cross contamination." So beware! You could be ingesting some gluten.

I gained weight too. The doctors looked at me like I was out of my mind! Most of them don't know much about it. good luck. (I like the saying, "When in doubt, go without.")

[ang1e0251]

Yeah, I hear you. I DX'd myself through elimination diet so my dr doesn't really believe me. Especially since I was one of those who gained weight.

I agree you need to tighten up your diet and really read those labels. I've stupidly glutened myself by slacking that way. Other sensitivities can pop up. Recently I've realized I'm reacting to nitritrites/ates in ham so now I'll have to more careful there. Rats, that was one of those foods I could have at a buffet. Oh well... I just don't want to be sick.

You will figure it out. Our systems are an ongoing jigsaw puzzle that keeps changing on us! We have to be the detective to figure out all the trickiness thrown at us. Keep laughing, it beats the alternative!

[ashylu929]

When I first went gluten free after my celiac diagnosis, I was "cautiously optimistic" (as I told my family and friends) that it was going to be life-changing for me. For years I had mood swings, fatigue, IBS-D symptoms, got sick all the time, and lots of headaches, including the occasional hormonally-triggered migraine. For the first two months, I felt like all of these symptoms were changing for the better. I realized for the first time in my life what it felt like not to be tired all the time - I could deal with this! About 2 months into being gluten-free, everything kind of started sucking again. The turnaround in symptoms followed a ruptured ovarian cyst, not that it's necessarily cause-and-effect. Here's what's been changing:

- Frequent headaches again and more migraines, including one straight week of them. They're so persistent that I had to take a leave of absence from work

- Other neurological oddities like ringing in my ears, muscle spasms, lots of little twitches, feeling phantom bugs on my limbs, sensitivity to light, and sometimes seeing a dark magenta circle right in the middle of my field of vision - this is all new to me, but seems to correspond with headaches and occur mostly at night

- Fatigue, irritability, fogginess, and being easily overwhelmed - nothing new to me but most certainly there

- My bowels are getting increasingly finicky. I have a lot of upper abdominal pain, bloating, D, have to go at least 3 times before I leave the house in the AM. Sometimes there is a white powdery cloudiness that comes out with the stools, and I'm not sure what that is - puss?

- Frequent cloudiness in my without any other UTI symptoms, sometimes pain where I imagine my kidneys to be but not sure what to make of that

- Mouth ulcerations

- Achy joints, especially at night, and a sore back where it hurts to breathe about a mile into a run (not far for me)

- Elevated pressure - today it's 140/111 for example, but historically it's always run about 110/60

- Elevated body temperature - It's within normal range, but I'm used to being in the low 97's F

Now I don't know what to think of any of this - clearly my body is still healing, but why am I having new symptoms and others worse than usual? Especially since the turnaround followed other physical trauma (the ruptured cyst), I'm concerned that there may be more to the autoimmune puzzle. A recent antibody check indicates I've been doing well with the gluten-free diet. I recently cut out dairy, and the only meds I'm on are birth control and mood stabilizers that I have been on before without issue. I was screened for the usual deficiencies and everything looked okay. I know I have a body in transition, so maybe it's just working out the kinks?

I am in communication with my doctors, and seeing a neurologist and my GI doctor in the upcoming week, but I am wondering what other people's experiences have been with recovery, if it's "normal" to have some things get worse instead of better post diet-change. I'm 25 and on disability - and just so frustrated with not knowing why I feel this way. What have your experiences been? Does this sound familiar to any of you??

I am having the headaches/fatigue/neurological oddities, too, but have never experienced many gastrointestinal symptoms or stomach issues...weird, huh?? Also, I thought it was "gluten-withdrawal" or whatever from going gluten-free...BUT...I had the headaches/etc. BEFORE going gluten-free...so I have no idea....have you been feeling any better?

[Amber M]

Yeah, I hear you. I DX'd myself through elimination diet so my dr doesn't really believe me. Especially since I was one of those who gained weight.

I agree you need to tighten up your diet and really read those labels. I've stupidly glutened myself by slacking that way. Other sensitivities can pop up. Recently I've realized I'm reacting to nitritrites/ates in ham so now I'll have to more careful there. Rats, that was one of those foods I could have at a buffet. Oh well... I just don't want to be sick.

You will figure it out. Our systems are an ongoing jigsaw puzzle that keeps changing on us! We have to be the detective to figure out all the trickiness thrown at us. Keep laughing, it beats the alternative!

I had the blood test and the endiscope biopsy after going gluten free. They did an outdated blood test and one biopsy of the duad. which came back negative. My allergist had me do the challenge diet and I got better, then very ill again. That was enough for me. But, I think my daughter has it, and does not want to take it seriously, so I decided to have the "stool and Gene" test through Entrolab. They received my samples yesterday and it will take 3 weeks to get my report. I guess I want to know for sure because I think several relatives have it. I have a nephew with the same problems as me and others with many auto-immune diseases that can be caused by it.

I wanted to say that I have suddenly had a problem with nitrates too. When I eat gluten free bacon, I get canker sores right after! I figured it was that because I knew I did not have gluten. It has happened about 3 or 4 times now. I think I just can't eat any additives any more. Pretty much all natural. Sucks in some ways, but at least we wil have to eat healthy!

[Silliest of Yaks]

Hi again, and thanks to everybody who has shared their support and experiences with me! While I don't like hearing that others have experienced health setbacks post-diagnosis, I do find solace in knowing I'm not alone, nor going crazy, and that sometimes the healing process just takes time. While things aren't getting significantly better, they have stabilized. It's much easier to deal with health problems when there aren't new scary things going wrong every week!

For those who want to know, here's an update on my treatment:

A mini elimination diet helped me realize that soy, coffee, and dairy were contributing to the grumpy tummy, so I've cut them out. I am considering digestive enzymes (checking w/ my doctor) and started probiotics; it seems like it couldn't hurt.

My GI specialist expressed concern about inflammatory bowel disease, particularly crohn's, due to some blood and potential mucous in my stools, and additional symptoms such as the achy joints. I'm now getting a colonoscopy with my follow-up endoscopy/intestinal biopsy next week. We'll learn what needs to be learned, which is hopefully nothing new.

I have strep B overgrowth in my urine, which may explain the cloudiness. They only medicate it when someone is pregnant or severely immune-suppressed, so I'll just be drinking ungodly amounts of water and keeping an eye on it.

The neurologist is helping me find headache medication I can tolerate, and started me on magnesium supplements. She verified that the ruptured cyst likely triggered the cycle of tension and migraine headaches, as injuries commonly precede the onset of headaches in people who are predisposed (thanks to the jaw clenching, etc of dealing with pain). While the rest of the neurological stuff fits in the with migraines, it was enough to raise some red flags (I now have unilateral numbness and tingling) so they did an MRI of my head and neck to be on the safe side. Results pending.

Emotionally, the combination of time off from work, stability of physical symptoms, meds, and a really good therapist has made a world of difference. I'm learning to use bio-feedback to manage the migraines as well as physical tension and anxiety. The diet changes are probably finally kicking in as well. It's so much easier to deal with the physical stuff when I don't feel so emotionally defeated on top of it! I'm still tired and achy, but my attitude is way better, and I'm done beating myself up over not being able to keep up with the people around me. I'm applying for part time jobs to make as much of a living as I can. Hopefully over time I'll get closer to my old self, but at the very least I'm coming to terms with how things are right now, and learning to prioritize self-care. That and my diet are the things I have the most control over, so I'll do all I can to use them to my advantage.

Thanks again to everybody for your support - I'll let you know if I learn anything significant. And good luck to my fellow still-recoverings. It's a tough time for a lot of us, isn't it?

[ang1e0251]

Watch the birth control, it took me awhile to realize that some days of mine had gluten. Now I'm back on the Nuvaring without problems.

[Silliest of Yaks]

My birth control and other meds are gluten-free, but I don't know for certain that they aren't contributing to my problems with their side effects. I tolerated the same medications well in the past, but who knows - my body is obviously changing! I wish there were a way to know for sure.

I also wonder if I have other food or chemical intolerances which may be at least contributing to my problems. How does one get to the bottom of these?

[Amber M]

My birth control and other meds are gluten-free, but I don't know for certain that they aren't contributing to my problems with their side effects. I tolerated the same medications well in the past, but who knows - my body is obviously changing! I wish there were a way to know for sure.

I also wonder if I have other food or chemical intolerances which may be at least contributing to my problems. How does one get to the bottom of these?

Precess of elimination I guess. Thats what I am doing right now. I take 2 steps foward and 5 back it seems. I try not to get too upset, but I just want to be well!!!!!!!!! I don't know what I'd do if I didn't have all of you. I helps me to realize I am not alone. Thanks and good luck!