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How Long Does It Take To Feel Better?

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I am new to this forum and to Celiac. I am really so discouraged and feeling very alone on my issues.

Briefly, I was diagnosed a few months ago. I have been totally gluten-free for a few months. My hair is falling out (this is bothering me the most). I have a low ferritin 22. My dermatologist said even though it is normal, it is low normal. I have been on an iron supplement for three months. I just got retested and my ferritin is the same! I clearly am not absorbing.

My question is how long does it take to get better? Am I ever going to absorb nutrients or is this going to be a forever thing? I already lost bone mass. I am discouraged because I eat SOOOOOO healthy. I really put a lot of effort into making sure my meals are balanced and healthy. I just want to be healthy and I feel like I am so unhealthy! I am taking supplements and I feel like everything I take in, isn't even getting absorbed.

THe other issue is occasional diarrhea with awful stomach pains. At least once a week I get this. I am tracking what I ate and I am not having any gluten. Shouldn't this be better by now that I am three months into this diet?

I am just panicing now that something else could be going on.

I just started taking Aloe vera juice to help with digestion. Has anyone experienced this? the continued intermittent diarrhea with pain? hair loss?

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Hi & welcome. I'm sorry that you're still feeling so bad. As you read on here and elsewhere you'll see that a lot of people's issues go far beyond gluten. Primarily lactose intolerance or intolerances to other common things like soy, or night shade vegetables (potatoes, tomatoes, peppers & eggplants).

Are you keeping a diary? Can you tie your reactions to anything in particular? If you don't feel better soon, you might look into the Specific Carbohydrate Diet or the GAPS diet.

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Hi & welcome. I'm sorry that you're still feeling so bad. As you read on here and elsewhere you'll see that a lot of people's issues go far beyond gluten. Primarily lactose intolerance or intolerances to other common things like soy, or night shade vegetables (potatoes, tomatoes, peppers & eggplants).

Are you keeping a diary? Can you tie your reactions to anything in particular? If you don't feel better soon, you might look into the Specific Carbohydrate Diet or the GAPS diet.

thanks for responding. I did get tested for lactose intolerance, it came out negative. I did the breathing machine. I haven't looked into other things though. I was keeping a diary for a naturopathic doctor I was going to. It usually happens at night, after dinner. I had a turkey burger last night with no bread. I made it from ground turkey that is gluten-free. Spicy brown mustard that is gluten-free and brown rice that is gluten-free. Can doctors test you for other food intolerances or is that something we do on our own?

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I am new to this forum and to Celiac. I am really so discouraged and feeling very alone on my issues.

Briefly, I was diagnosed a few months ago. I have been totally gluten-free for a few months. My hair is falling out (this is bothering me the most). I have a low ferritin 22. My dermatologist said even though it is normal, it is low normal. I have been on an iron supplement for three months. I just got retested and my ferritin is the same! I clearly am not absorbing.

My question is how long does it take to get better? Am I ever going to absorb nutrients or is this going to be a forever thing? I already lost bone mass. I am discouraged because I eat SOOOOOO healthy. I really put a lot of effort into making sure my meals are balanced and healthy. I just want to be healthy and I feel like I am so unhealthy! I am taking supplements and I feel like everything I take in, isn't even getting absorbed.

THe other issue is occasional diarrhea with awful stomach pains. At least once a week I get this. I am tracking what I ate and I am not having any gluten. Shouldn't this be better by now that I am three months into this diet?

I am just panicing now that something else could be going on.

I just started taking Aloe vera juice to help with digestion. Has anyone experienced this? the continued intermittent diarrhea with pain? hair loss

Hey

I have quite a severe case of celiac so I know how you feel. After my diagnosis things got worse before they got better. I am 6'5" in height and at the time of my diagnosis I weighed approx 130 lbs

Since then I have had regular b 12 shots(not the pills) and am taking on a daily basis 1 multi vitamin, 2 iron pills, 2 calcium, 2 zinc, 1 vitamin D, and 1/2 a magnesium pill. I get monthly bloodwork done to keep track of how things are going as well. As for the diaorhea I have used cipro and prednisone(5 days only) and this has stopped things.IMMODIUM DOESN'T WORK, I KNOW FROM LEARNING THE HARD WAY DON'T LET ANY DOCTOR TELL YOU DIFFERENTLY. AHave you consulted a dietician? They can help a great deal. but the big thing is getting your bloodwork under control, and taking the right suppliments. Don't take them on your own.

About the aloe vera juice I tried it and it didn't work. Of all the things I've tried the Prednisone has worked the best to heal things up. I know it's a nasty drug but I am so much better then I was in the spring.

Best of luck

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I am new to this forum and to Celiac. I am really so discouraged and feeling very alone on my issues.

Briefly, I was diagnosed a few months ago. I have been totally gluten-free for a few months. My hair is falling out (this is bothering me the most). I have a low ferritin 22. My dermatologist said even though it is normal, it is low normal. I have been on an iron supplement for three months. I just got retested and my ferritin is the same! I clearly am not absorbing.

My question is how long does it take to get better? Am I ever going to absorb nutrients or is this going to be a forever thing? I already lost bone mass. I am discouraged because I eat SOOOOOO healthy. I really put a lot of effort into making sure my meals are balanced and healthy. I just want to be healthy and I feel like I am so unhealthy! I am taking supplements and I feel like everything I take in, isn't even getting absorbed.

THe other issue is occasional diarrhea with awful stomach pains. At least once a week I get this. I am tracking what I ate and I am not having any gluten. Shouldn't this be better by now that I am three months into this diet?

I am just panicing now that something else could be going on.

I just started taking Aloe vera juice to help with digestion. Has anyone experienced this? the continued intermittent diarrhea with pain? hair loss?

Hi valt,

You mentioned in another response that you tested negative for lactose intolerance. I too am not lactose intolerant, but I AM intolerant of casein - the protein in cow's milk! That was one of the major ongoing issues that continued after I went gluten-free. The other big one turned out to be soy. But also, just to reassure you (I hope), it does take time. I'm 5 1/2 months gluten free, 4 months casein free, 2 months soy free (thank you Blue Diamond for the soy lecithin in you almond milk!!! grr.....). I saw a drastic improvement in the first couple weeks, then a lot of up and downs. The last month has been very good and slowly getting better. Hang in there!

One another note, you might need to look at a special diet specifically designed for rebuilding your intestinal flora. Either the SCD (Specific Carbohydrate Diet) or the GAPS (Gut And Psychology Syndrome) diet may be something you want to look at. From personal experience with the GAPS diet, though not easy to get going on the effect on my system once I started (about 6 weeks ago) it has been dramatic. Especially when I introduced the homemade probiotic foods (which after a couple false starts turned out to be quite easy once I got the hang of them!).

The GAPS diet is very similar to the SCD and you can find a thread about the SCD on the forums here.

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I am new to this forum and to Celiac. I am really so discouraged and feeling very alone on my issues.

Briefly, I was diagnosed a few months ago. I have been totally gluten-free for a few months. My hair is falling out (this is bothering me the most). I have a low ferritin 22. My dermatologist said even though it is normal, it is low normal. I have been on an iron supplement for three months. I just got retested and my ferritin is the same! I clearly am not absorbing.

My question is how long does it take to get better? Am I ever going to absorb nutrients or is this going to be a forever thing? I already lost bone mass. I am discouraged because I eat SOOOOOO healthy. I really put a lot of effort into making sure my meals are balanced and healthy. I just want to be healthy and I feel like I am so unhealthy! I am taking supplements and I feel like everything I take in, isn't even getting absorbed.

THe other issue is occasional diarrhea with awful stomach pains. At least once a week I get this. I am tracking what I ate and I am not having any gluten. Shouldn't this be better by now that I am three months into this diet?

I am just panicing now that something else could be going on.

I just started taking Aloe vera juice to help with digestion. Has anyone experienced this? the continued intermittent diarrhea with pain? hair loss?

I meant to say something else yesterday too......

YOU ARE NEVER ALONE

We are here for you

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Hi valt,

You mentioned in another response that you tested negative for lactose intolerance. I too am not lactose intolerant, but I AM intolerant of casein - the protein in cow's milk! That was one of the major ongoing issues that continued after I went gluten-free. The other big one turned out to be soy. But also, just to reassure you (I hope), it does take time. I'm 5 1/2 months gluten free, 4 months casein free, 2 months soy free (thank you Blue Diamond for the soy lecithin in you almond milk!!! grr.....). I saw a drastic improvement in the first couple weeks, then a lot of up and downs. The last month has been very good and slowly getting better. Hang in there!

One another note, you might need to look at a special diet specifically designed for rebuilding your intestinal flora. Either the SCD (Specific Carbohydrate Diet) or the GAPS (Gut And Psychology Syndrome) diet may be something you want to look at. From personal experience with the GAPS diet, though not easy to get going on the effect on my system once I started (about 6 weeks ago) it has been dramatic. Especially when I introduced the homemade probiotic foods (which after a couple false starts turned out to be quite easy once I got the hang of them!).

The GAPS diet is very similar to the SCD and you can find a thread about the SCD on the forums here.

Hello Korwyn,

Thank you for responding! Did your GI doctor test you for casein and soy? I am just wondering why my doctors haven't tested me for these things. That is very helpful. I am going to bring that up to her this week and get tested. Also did your doctor put you on that diet, GAPS or did you find out about it here?

Thanks so much!!!!!

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Hello Korwyn,

Thank you for responding! Did your GI doctor test you for casein and soy? I am just wondering why my doctors haven't tested me for these things. That is very helpful. I am going to bring that up to her this week and get tested. Also did your doctor put you on that diet, GAPS or did you find out about it here?

Thanks so much!!!!!

No, my Dr. did not test me for that. The casein turned up through my Enterolab test (which I self ordered) and showed anti-bodies for the Casein protein as well as gluten, and the soy came up through an elimination diet and through various symptomatic reactions to getting soy in my diet. It takes me about two weeks to recover from even the smallest amount of soy in my intake. The GAPS diets actually came up through my wife's pastor. At her church (and a long-time friend of my wife) one of the members is a registered dietitian. Anyway, her pastor's son is autistic, and they had been talking about this GAPS diet, and the incredible change they have seen in their son since putting him on this diet. Then the dietitian had been talking about gluten, gluten-free, and the gut-brain connection. This was all well before I was diagnosed. So when I was diagnosed, and I was still having various symptoms after going gluten-free I started talking to them, and looking into the gut/brain thing and the SCD and GAPS and all the various research being done in Europe especially. There is a website: http://www.gapsdiet.com which I read some on before ordering the book to read through. It has helped me a lot, and I am starting to be able to eat certain things again (like non-processed corn) and various other foods that were giving me trouble. Not to mention the improvement in my nutrient absorption. My last blood panel and vitamin panel came back almost completely normal. I'm still having a low HDL cholesterol and I'm borderline anemic, but all the vitamin levels came back ok, as well as all my other blood work.

As far as the doctor, I'm working through my family doctor, who while not overly familiar with Celiac or gluten intolerance is wonderful at working with me and has been very attentive and supportive of the research I've been doing and information I've been providing her. The closest Celiac specialist who is an actual Dr. is almost 2 hours away from me. Unless you are very fortunate and blessed, you may find that you will be educating your doctors. Especially since unless they are on the cutting edge and truly specialize in Celiac Disease the generally available information here in the US is quite a ways behind the most current research. Had I lived in Europe, I probably would have been diagnosed 10 to 15 years ago.

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I am new to this forum and to Celiac. I am really so discouraged and feeling very alone on my issues.

Briefly, I was diagnosed a few months ago. I have been totally gluten-free for a few months. My hair is falling out (this is bothering me the most). I have a low ferritin 22. My dermatologist said even though it is normal, it is low normal. I have been on an iron supplement for three months. I just got retested and my ferritin is the same! I clearly am not absorbing.

My question is how long does it take to get better? Am I ever going to absorb nutrients or is this going to be a forever thing? I already lost bone mass. I am discouraged because I eat SOOOOOO healthy. I really put a lot of effort into making sure my meals are balanced and healthy. I just want to be healthy and I feel like I am so unhealthy! I am taking supplements and I feel like everything I take in, isn't even getting absorbed.

THe other issue is occasional diarrhea with awful stomach pains. At least once a week I get this. I am tracking what I ate and I am not having any gluten. Shouldn't this be better by now that I am three months into this diet?

I am just panicing now that something else could be going on.

I just started taking Aloe vera juice to help with digestion. Has anyone experienced this? the continued intermittent diarrhea with pain? hair loss?

Hi Valt -

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Hi Valt -

I too am new to Celiac. I was diagnosed a month ago. I have been on a gluten-free diet ever since except for being glutened once (ate Quaker Oats instant Grits) and ended up in the ER with terrible stomach pain). I feel worse than ever before. Terrible constipation and/or diarrhea. Never know what the day will bring, fatigue, sometimes nausea. I am taking a Multi-Vitamin and Omega 3,6,9 as the Nutritionist suggested. I just want to know when we will start to feel better. I totally feel your pain. Hopefully someone on this wonderful site can give us some insight.

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valt and trueworshiper,

It can take some time to feel better, especially if you have other intolerances, have been ill a long time, and/or have lots of damage. It's difficult sometimes to read of those who go on the gluten-free diet and feel better relatively quickly. It doesn't always happen that way, you are not alone.

It took me all of 2 years to feel really good most days. It's an up and down kind of thing. I think keeping a simple food journal is a great idea, and keeping your diet simple with no processed gluten-free products. Just whole naturally gluten-free foods.

I had to also pare down my suppliments--just about everything would upset my stomach. Have you checked into Kirkman Labs Hypoallergenic Vitamins? They are the only type I can tolerate in a multi.

http://www.kirkmanlabs.com/

Check your personal care products too, if you haven't done so. Using gluten-free and unscented products is a good idea. Let us know if there's anything else you need :)

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valt and trueworshiper,

It can take some time to feel better, especially if you have other intolerances, have been ill a long time, and/or have lots of damage. It's difficult sometimes to read of those who go on the gluten-free diet and feel better relatively quickly. It doesn't always happen that way, you are not alone.

It took me all of 2 years to feel really good most days. It's an up and down kind of thing. I think keeping a simple food journal is a great idea, and keeping your diet simple with no processed gluten-free products. Just whole naturally gluten-free foods.

I had to also pare down my suppliments--just about everything would upset my stomach. Have you checked into Kirkman Labs Hypoallergenic Vitamins? They are the only type I can tolerate in a multi.

http://www.kirkmanlabs.com/

Check your personal care products too, if you haven't done so. Using gluten-free and unscented products is a good idea. Let us know if there's anything else you need :)

Thank you so much Jerseyangel. I have changed my shampoos, body wash, laundry detergent and cleaning products - slow and expensive process. I will def. check into Kirkman Labs. I have been sick a really long time. Almost 30 years. I started a food journal but after the accidental glutening I haven't felt like eating very much so haven't really kept up with it. I will make it a point to start today! Thanks again. You really are an angel

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Thank you so much Jerseyangel. I have changed my shampoos, body wash, laundry detergent and cleaning products - slow and expensive process. I will def. check into Kirkman Labs. I have been sick a really long time. Almost 30 years. I started a food journal but after the accidental glutening I haven't felt like eating very much so haven't really kept up with it. I will make it a point to start today! Thanks again. You really are an angel

You are very kind :D I was sick for over 20 years, so I can relate to how you feel. It really is a slow process to figure this all out, but you will and before long the good days will begin to outnumber the bad ones. It kinda sneaks up on you ;)

Take care and feel free to contact me anytime.

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You are very kind :D I was sick for over 20 years, so I can relate to how you feel. It really is a slow process to figure this all out, but you will and before long the good days will begin to outnumber the bad ones. It kinda sneaks up on you ;)

Take care and feel free to contact me anytime.

Thank you so much for advice and insight. it really does help. I will keep chugging along, slowly but surely....hopefully ;);)

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I am new to this forum and to Celiac. I am really so discouraged and feeling very alone on my issues.

Briefly, I was diagnosed a few months ago. I have been totally gluten-free for a few months. My hair is falling out (this is bothering me the most). I have a low ferritin 22. My dermatologist said even though it is normal, it is low normal. I have been on an iron supplement for three months. I just got retested and my ferritin is the same! I clearly am not absorbing.

My question is how long does it take to get better? Am I ever going to absorb nutrients or is this going to be a forever thing? I already lost bone mass. I am discouraged because I eat SOOOOOO healthy. I really put a lot of effort into making sure my meals are balanced and healthy. I just want to be healthy and I feel like I am so unhealthy! I am taking supplements and I feel like everything I take in, isn't even getting absorbed.

THe other issue is occasional diarrhea with awful stomach pains. At least once a week I get this. I am tracking what I ate and I am not having any gluten. Shouldn't this be better by now that I am three months into this diet?

I am just panicing now that something else could be going on.

I just started taking Aloe vera juice to help with digestion. Has anyone experienced this? the continued intermittent diarrhea with pain? hair loss?

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I was diagnosed 10 months ago and still have bad days even though I'm extremely careful with my diet. I was told it could take 2 years to feel better "most of the time". Also, when I'm extremely stressed out, I get symptoms even though I haven't eaten any gluten. It's really frustating, but I just try to really enjoy the good days when I have them. Remember, everyone is different and it will take time to "heal". PS- I eat lots of bananas and rice. ;-)

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    With the advent of the Internet a whole new field of anecdotal information was emerging, connecting a variety of neurological symptoms to celiac disease. While many medical practitioners and researchers were casting aspersions on these assertions, a select few chose to explore such claims using scientific research designs and methods. While connections between stuttering and gluten consumption seem to have been overlooked by the medical research community, there is a rich literature on the Internet that cries out for more structured investigation of this connection. Conversely, perhaps a publication bias of the peer review process excludes work that explores this connection.
    Whatever the reason that stuttering has not been reported in the medical literature in association with gluten ingestion, a number of personal disclosures and comments suggesting a connection between gluten and stuttering can be found on the Internet. Abid Hussain, in an article about food allergy and stuttering said: “The most common food allergy prevalent in stutterers is that of gluten which has been found to aggravate the stutter” (10). Similarly, Craig Forsythe posted an article that includes five cases of self-reporting individuals who believe that their stuttering is or was connected to gluten, one of whom also experiences stuttering from foods containing yeast (11). The same site contains one report of a stutterer who has had no relief despite following a gluten free diet for 20 years (11). Another stutterer, Jay88, reports the complete disappearance of her/his stammer on a gluten free diet (12). Doubtless there are many more such anecdotes to be found on the Internet* but we have to question them, exercising more skepticism than we might when reading similar claims in a peer reviewed scientific or medical journal.
    There are many reports in such journals connecting brain and neurological ailments with gluten, so it is not much of a stretch, on that basis alone, to suspect that stuttering may be a symptom of the gluten syndrome. Rodney Ford has even characterized celiac disease as an ailment that may begin through gluten-induced neurological damage (13) and Marios Hadjivassiliou and his group of neurologists and neurological investigators have devoted considerable time and effort to research that reveals gluten as an important factor in a majority of neurological diseases of unknown origin (14) which, as I have pointed out previously, includes most neurological ailments.
    My own experience with stuttering is limited. I stuttered as a child when I became nervous, upset, or self-conscious. Although I have been gluten free for many years, I haven’t noticed any impact on my inclination to stutter when upset. I don’t know if they are related, but I have also had challenges with speaking when distressed and I have noticed a substantial improvement in this area since removing gluten from my diet. Nonetheless, I have long wondered if there is a connection between gluten consumption and stuttering. Having done the research for this article, I would now encourage stutterers to try a gluten free diet for six months to see if it will reduce or eliminate their stutter. Meanwhile, I hope that some investigator out there will research this matter, publish her findings, and start the ball rolling toward getting some definitive answers to this question.
    Sources:
    1. Toft M, Dietrichs E. Aggravated stuttering following subthalamic deep brain stimulation in Parkinson’s disease--two cases. BMC Neurol. 2011 Apr 8;11:44.
    2. Tani T, Sakai Y. Stuttering after right cerebellar infarction: a case study. J Fluency Disord. 2010 Jun;35(2):141-5. Epub 2010 Mar 15.
    3. Lundgren K, Helm-Estabrooks N, Klein R. Stuttering Following Acquired Brain Damage: A Review of the Literature. J Neurolinguistics. 2010 Sep 1;23(5):447-454.
    4. Jäncke L, Hänggi J, Steinmetz H. Morphological brain differences between adult stutterers and non-stutterers. BMC Neurol. 2004 Dec 10;4(1):23.
    5. Kell CA, Neumann K, von Kriegstein K, Posenenske C, von Gudenberg AW, Euler H, Giraud AL. How the brain repairs stuttering. Brain. 2009 Oct;132(Pt 10):2747-60. Epub 2009 Aug 26.
    6. Galantucci S, Tartaglia MC, Wilson SM, Henry ML, Filippi M, Agosta F, Dronkers NF, Henry RG, Ogar JM, Miller BL, Gorno-Tempini ML. White matter damage in primary progressive aphasias: a diffusion tensor tractography study. Brain. 2011 Jun 11.
    7. Lundgren K, Helm-Estabrooks N, Klein R. Stuttering Following Acquired Brain Damage: A Review of the Literature. J Neurolinguistics. 2010 Sep 1;23(5):447-454.
    8. [No authors listed] Case records of the Massachusetts General Hospital. Weekly clinicopathological exercises. Case 43-1988. A 52-year-old man with persistent watery diarrhea and aphasia. N Engl J Med. 1988 Oct 27;319(17):1139-48
    9. Molteni N, Bardella MT, Baldassarri AR, Bianchi PA. Celiac disease associated with epilepsy and intracranial calcifications: report of two patients. Am J Gastroenterol. 1988 Sep;83(9):992-4.
    10. http://ezinearticles.com/?Food-Allergy-and-Stuttering-Link&id=1235725 
    11. http://www.craig.copperleife.com/health/stuttering_allergies.htm 
    12. https://www.celiac.com/forums/topic/73362-any-help-is-appreciated/
    13. Ford RP. The gluten syndrome: a neurological disease. Med Hypotheses. 2009 Sep;73(3):438-40. Epub 2009 Apr 29.
    14. Hadjivassiliou M, Gibson A, Davies-Jones GA, Lobo AJ, Stephenson TJ, Milford-Ward A. Does cryptic gluten sensitivity play a part in neurological illness? Lancet. 1996 Feb 10;347(8998):369-71.