0
granolagal

Hair Loss - When Will It Come Back?

Rate this topic

Recommended Posts

In the last 2 years I've lost about 80% of my hair. No bald patches but thinning terribly and breakage everywhere. I can't wear it down, I fear using an elastic, I only air dry it, I use hot oil treatments and all kinds of leave in conditioners. I was sent to a dermatologist who said that since I don't have bald patches there's nothing she can do for me. My doctor did blood work and it turns out my iron level is at 10. I guess it should be at 40. Anyway, I took supplements for 3 months but my iron only went down...that eventually led to my Celiac Disease diagnosis (amoungst other symptoms). My question is....did anyone else have hair loss issues? If so - did it ever fully grow back??? I'm praying the answer is "yes". Please also let me know how long it took to grow back.

Thanks in advance...

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


First, I hope that you're now receiving iron infusions to get your iron level up. Second, yes, I've had the thinning-hair issue. Mine apparently was caused by a combination of thyroid problems, low zinc, low B vitamins, and low silicon. I ended up taking chelated zinc, a fantastic silicon product called "BioSil," and a co-enzyme B complex vitamin. I also corrected my thyroid problem with medication. My hair grew back in thick and shiny--I noticed new growth all over my head after about 3-4 weeks.

  • Upvote 1

Share this post


Link to post
Share on other sites

First, I hope that you're now receiving iron infusions to get your iron level up. Second, yes, I've had the thinning-hair issue. Mine apparently was caused by a combination of thyroid problems, low zinc, low B vitamins, and low silicon. I ended up taking chelated zinc, a fantastic silicon product called "BioSil," and a co-enzyme B complex vitamin. I also corrected my thyroid problem with medication. My hair grew back in thick and shiny--I noticed new growth all over my head after about 3-4 weeks.

Thank you! A glimmer of hope! I had my thyroid tested and it's normal. My doctor said she doesn't administer the iron shots. She just wants me to wait until I've been gluten-free for a while and then start taking the supplements again. But it's getting so bad. Everyday I cry getting ready for work. It's terribly embarrassing. I'm going to look up BioSil. But when should I start taking these supplements? How long will it take before my body will start absorbing them?!?

EDIT: p.s. I've only been gluten-free (diagnosed) for 6 days...

Share this post


Link to post
Share on other sites

I would take your iron now. It's unlikely that 100% of your intestines can't absorb anything at all. If you are taking the iron, you know that there is always some available for the part of your intestine that can pick it up. Don't take the iron with any calcium - food or vitamin. Also, get some sublingual B 12. You put it under your tongue and it is absorbed thru your " skin". The B 12 helps you utilize the iron.

  • Upvote 2

Share this post


Link to post
Share on other sites

I would take your iron now. It's unlikely that 100% of your intestines can't absorb anything at all. If you are taking the iron, you know that there is always some available for the part of your intestine that can pick it up. Don't take the iron with any calcium - food or vitamin. Also, get some sublingual B 12. You put it under your tongue and it is absorbed thru your " skin". The B 12 helps you utilize the iron.

True. Although I wonder why my iron went down after being on the supplements for 3 months? I'm so desperate to feel normal again and have hair, I may just start taking the supplements now. Like you said, it's got to be better than none. Thanks for the tip on B12, I'll have to look for it at the pharmacy. So much to learn.... :unsure:

Share this post


Link to post
Share on other sites
Ads by Google:


In addition to the iron and sublingual B12 also add in a biotin supplement and make sure that anything you are using on your hair is free of gluten. It usually takes at least 3 months to see any noticeable regrowth. I know how disheartening it is to lose so much hair but it should grow back. Do be very strict with the diet though as for some of us the hairloss can be related just as much to the autoimmune issues of celiac as it is to the nutritional problems. I still lose hair whenever I am glutened severely and it takes about a month for the shedding to stop.

Share this post


Link to post
Share on other sites

All good suggestions, but I added the B vitamins and Biotin and nothing happened. It was only when I took chelated zinc and BioSil that my hair regrew. It was absolutely emotional for me to see new growth all over my head! I wish this same thing to happen to you...

As for the iron, your doctor does NOT understand that you're unable to absorb iron. Most doctors won't give iron injections, and that's fine. However, it's possible to get iron infusions, and many doctors are unaware of this. Your doctor can order infusions, and if she doesn't know how much to prescribe, she can speak to a doctor or nurse who does know. You receive infusions at the hospital in their infusion clinic--you receive iron through an IV. I was unaware of this procedure until someone advised me on this forum. I was on iron infusions for nearly two years before my body was finally able to absorb iron. Without the infusions, I may have died. Please don't place yourself in harm's way--iron is crucial for good health, and if you're lacking in iron for longer than two years, you can begin to develop cancer because of low cellular respiration. If your doctor refuses to prescribe iron infusions, find another doctor. I'm serious.

  • Upvote 1

Share this post


Link to post
Share on other sites

Rosetapper:

What type of thyroid medication did/do you take, and how much biosil are you using?

Thanks,

Karen

Share this post


Link to post
Share on other sites

In the last 2 years I've lost about 80% of my hair. No bald patches but thinning terribly and breakage everywhere. I can't wear it down, I fear using an elastic, I only air dry it, I use hot oil treatments and all kinds of leave in conditioners. I was sent to a dermatologist who said that since I don't have bald patches there's nothing she can do for me. My doctor did blood work and it turns out my iron level is at 10. I guess it should be at 40. Anyway, I took supplements for 3 months but my iron only went down...that eventually led to my Celiac Disease diagnosis (amoungst other symptoms). My question is....did anyone else have hair loss issues? If so - did it ever fully grow back??? I'm praying the answer is "yes". Please also let me know how long it took to grow back.

Thanks in advance...

My iron was around 14 at its lowest and alopecia was definitely one of my symptoms. My level is still only about 25 after two years on supplements, but the hair loss was helped by taking iron pills. My hair is much, much better than it was, but is still not back to what it looked like about 5-6 years ago (before all my problems started). I took iron for close to a year before I really started noticing a difference in my hair though... I think it can take awhile.

BTW, some dermatologists who believe that hair loss can be caused by low serum ferritin say you need to get your levels back up to 50-75 to really have optimal hair growth.

Share this post


Link to post
Share on other sites

Thank you! A glimmer of hope! I had my thyroid tested and it's normal. My doctor said she doesn't administer the iron shots. She just wants me to wait until I've been gluten-free for a while and then start taking the supplements again. But it's getting so bad. Everyday I cry getting ready for work. It's terribly embarrassing. I'm going to look up BioSil. But when should I start taking these supplements? How long will it take before my body will start absorbing them?!?

EDIT: p.s. I've only been gluten-free (diagnosed) for 6 days...

I am not a doc but I don't understand why she wanted you to wait til you have been on a gluten-free diet to start supplements?? I had hair loss but I didn't wait for doc to tell me what I needed to take for supplements, as I would still be waiting at this point unfortunately. BioSil drops will help a great deal but make sure you get some zinc, B complex, iron and look at Primrose oil. I had a thyroid growth and belonged to a group for people with thyroid issues. The leader lost a whole bunch of hair and contributed Primrose oil for the regrowth. Her hair looks fantastic so it is possible, I've seen it with my own eyes.

Share this post


Link to post
Share on other sites


Ads by Google:


I take Armour Thyroid because I need both T3 and T4, and I take one capsule of BioSil per day. Of course, drops may be better for you, though, since you're currently having absorption problems.

I sure hope you follow through on requesting iron infusions. You seem like a good candidate for them--and shame on your doctor for not being knowledgeable enough to order them for you! All of my doctors at Kaiser had never heard of infusions, but one of them was willing to look into it. He called me soon after and told me that the Infusion Center told him that iron was the most common type of infusion. However, it appears that most doctors never got that memo...

Share this post


Link to post
Share on other sites

I've also had thinning hair problems and know how hard it can be to look in the mirror each day to see the damage. My hair dresser recommended taking biotin. When I first started taking it I didn't notice a difference, but after a few months and increasing my dosage, I noticed a big difference.

My doctor also put me on prescription iron supplements. And I switched to gluten-free shampoo and styling products. There are a bunch of threads on here with different recommendations on gluten-free products.

You said your thyroid was tested. Was it a regular TSH test? Or a T3 and T4 test. I read somewhere that you can have a regular TSH test but still have thyroid problems that are only detectable by testing T3 and T4 levels. There are a lot of people on this board way more knowledgable about the thyroid stuff than me, so maybe they can confirm if I speaking correctly about that.

Also, for me my hair got worse on the gluten free diet before it got better. So be patient. It's taken me several months for my hair to look better. At first I was very discouraged, but now I'm seeing progress.

And I'm definitely going to run out and get some BioSil and Primrose Oil to try.

Share this post


Link to post
Share on other sites

Okay, so I went out today and bought chelated zinc, BioSil (which was sooooo expensive!!!) and primrose oil (which is a pill). They're all pill form actually - I couldn't find anything in liquid form. So hopefully my system will digest it. It'll be a real waste of money if my system can't absorb this stuff. With tax it was close to $125. So how many pills of each thing should I be taking? Any suggestions?

Zinc Chelazome: I think the pills have 155 mg each (says to take one a day)

BioSil: (instructions say to take 2 a day)

Primrose Oil: 1000 mg softgels (instructions say to take 2-3 a day!?)

I also have GNC Ultra Women's Nourish Hair which contains all B vitamins including biotin. Does anyone know if I'm combining too many things?? :blink:

Share this post


Link to post
Share on other sites

Okay, so I went out today and bought chelated zinc, BioSil (which was sooooo expensive!!!) and primrose oil (which is a pill). They're all pill form actually - I couldn't find anything in liquid form. So hopefully my system will digest it. It'll be a real waste of money if my system can't absorb this stuff. With tax it was close to $125. So how many pills of each thing should I be taking? Any suggestions?

Zinc Chelazome: I think the pills have 155 mg each (says to take one a day)

BioSil: (instructions say to take 2 a day)

Primrose Oil: 1000 mg softgels (instructions say to take 2-3 a day!?)

I also have GNC Ultra Women's Nourish Hair which contains all B vitamins including biotin. Does anyone know if I'm combining too many things?? :blink:

You are right on track, and no this is not too much to combine. I think everyone of those products reads on the back that they should be taken with a meal. Do that to help with absorbtion. At first you might notice little change. The first thing I noticed was my hair was falling out. Zinc and Biosil are both good to for other things, I know it's not cheap and you may wonder if it is doing anything. I went off my BioSil to see if it was making a difference and my har started falling out again. I have not used the tablets. The drops taste terrible even in juice so if the tabs work, great! Let us know how it works for you!!

Share this post


Link to post
Share on other sites

My immune system is so weak I respond to eggs and dustmites like I have an allergy. (The allergy tests show very, very mild sensitivity, but my body says other wise. Hoping to get well now that I'm focuses on the celiac.) One symptom is hair weakness and thinning. As soon as I cut back my eggs, it goes away.

Share this post


Link to post
Share on other sites

@ rosetapper23...

Is it really true that you can get cancer from having low iron stores for over 2 years??? That's very worrying, I was diagnosed (finally after many years) with celiac and a ferritin level of 2.4. I'm in supplements now, it's going up very slowly but this is worrying as I have always been on the low side for ferritin due to being vegetarian.

How high are these cancer/low ferritin risks, do you know?? :(

Ps my hair seems worse after taking iron for some reason, it's so so thin, I can't even look in the mirror... And find it hard to touch it...

Share this post


Link to post
Share on other sites

In the last 2 years I've lost about 80% of my hair. No bald patches but thinning terribly and breakage everywhere. I can't wear it down, I fear using an elastic, I only air dry it, I use hot oil treatments and all kinds of leave in conditioners. I was sent to a dermatologist who said that since I don't have bald patches there's nothing she can do for me. My doctor did blood work and it turns out my iron level is at 10. I guess it should be at 40. Anyway, I took supplements for 3 months but my iron only went down...that eventually led to my Celiac Disease diagnosis (amoungst other symptoms). My question is....did anyone else have hair loss issues? If so - did it ever fully grow back??? I'm praying the answer is "yes". Please also let me know how long it took to grow back.

Thanks in advance...

 

I have spent thousands of dollars trying to figure out what is wrong with me because my hair has significantly thinned in the last 6-7 years and I'm only 29. I have also spent countless hours researching why. I found out I was allergic to gluten amongst many other things. I have decided to get tested for celiac's, even though I don't want to undergo a colonoscopy. I am now convinced that gluten is the culprit of my hair loss. My question to you is, did your hair grown back once you became gluten free, about how long did it take and did any of those suggestions work for you? Please HELP!!

Share this post


Link to post
Share on other sites

I have spent a lifetime growing (and regrowing) back my hair.  Seems like anything will make  it fall out, including gluten.  But also antibiotics, and anti-rheumatoid drugs like methotrexate,  and now anti-coagulants.  Seems like everything that is anti- something is also anti-hair :lol:   Forrtunately, so far, it always does eventually grow back in, or I would be bald  :wacko:

Share this post


Link to post
Share on other sites

I have spent thousands of dollars trying to figure out what is wrong with me because my hair has significantly thinned in the last 6-7 years and I'm only 29. I have also spent countless hours researching why. I found out I was allergic to gluten amongst many other things. I have decided to get tested for celiac's, even though I don't want to undergo a colonoscopy. I am now convinced that gluten is the culprit of my hair loss. My question to you is, did your hair grown back once you became gluten free, about how long did it take and did any of those suggestions work for you? Please HELP!!

 

 

 

Testing for celiac is a blood panel, then an endoscopy with biopsy (not a colonoscopy) if that changes your mind at all. (technically, there is no

gluten allergy--do you mean you are allergic to wheat?)

Share this post


Link to post
Share on other sites


Ads by Google:


Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
0

  • Who's Online   19 Members, 1 Anonymous, 963 Guests (See full list)

  • Top Posters +

  • Recent Articles

    Jefferson Adams
    Celiac.com 06/19/2018 - Could baking soda help reduce the inflammation and damage caused by autoimmune diseases like rheumatoid arthritis, and celiac disease? Scientists at the Medical College of Georgia at Augusta University say that a daily dose of baking soda may in fact help reduce inflammation and damage caused by autoimmune diseases like rheumatoid arthritis, and celiac disease.
    Those scientists recently gathered some of the first evidence to show that cheap, over-the-counter antacids can prompt the spleen to promote an anti-inflammatory environment that could be helpful in combating inflammatory disease.
    A type of cell called mesothelial cells line our body cavities, like the digestive tract. They have little fingers, called microvilli, that sense the environment, and warn the organs they cover that there is an invader and an immune response is needed.
    The team’s data shows that when rats or healthy people drink a solution of baking soda, the stomach makes more acid, which causes mesothelial cells on the outside of the spleen to tell the spleen to go easy on the immune response.  "It's most likely a hamburger not a bacterial infection," is basically the message, says Dr. Paul O'Connor, renal physiologist in the MCG Department of Physiology at Augusta University and the study's corresponding author.
    That message, which is transmitted with help from a chemical messenger called acetylcholine, seems to encourage the gut to shift against inflammation, say the scientists.
    In patients who drank water with baking soda for two weeks, immune cells called macrophages, shifted from primarily those that promote inflammation, called M1, to those that reduce it, called M2. "The shift from inflammatory to an anti-inflammatory profile is happening everywhere," O'Connor says. "We saw it in the kidneys, we saw it in the spleen, now we see it in the peripheral blood."
    O'Connor hopes drinking baking soda can one day produce similar results for people with autoimmune disease. "You are not really turning anything off or on, you are just pushing it toward one side by giving an anti-inflammatory stimulus," he says, in this case, away from harmful inflammation. "It's potentially a really safe way to treat inflammatory disease."
    The research was funded by the National Institutes of Health.
    Read more at: Sciencedaily.com

    Jefferson Adams
    Celiac.com 06/18/2018 - Celiac disease has been mainly associated with Caucasian populations in Northern Europe, and their descendants in other countries, but new scientific evidence is beginning to challenge that view. Still, the exact global prevalence of celiac disease remains unknown.  To get better data on that issue, a team of researchers recently conducted a comprehensive review and meta-analysis to get a reasonably accurate estimate the global prevalence of celiac disease. 
    The research team included P Singh, A Arora, TA Strand, DA Leffler, C Catassi, PH Green, CP Kelly, V Ahuja, and GK Makharia. They are variously affiliated with the Division of Gastroenterology and Hepatology, Beth Israel Deaconess Medical Center, Boston, Massachusetts; Lady Hardinge Medical College, New Delhi, India; Innlandet Hospital Trust, Lillehammer, Norway; Centre for International Health, University of Bergen, Bergen, Norway; Division of Gastroenterology and Hepatology, Beth Israel Deaconess Medical Center, Boston, Massachusetts; Gastroenterology Research and Development, Takeda Pharmaceuticals Inc, Cambridge, MA; Department of Pediatrics, Università Politecnica delle Marche, Ancona, Italy; Department of Medicine, Columbia University Medical Center, New York, New York; USA Celiac Disease Center, Columbia University Medical Center, New York, New York; and the Department of Gastroenterology and Human Nutrition, All India Institute of Medical Sciences, New Delhi, India.
    For their review, the team searched Medline, PubMed, and EMBASE for the keywords ‘celiac disease,’ ‘celiac,’ ‘tissue transglutaminase antibody,’ ‘anti-endomysium antibody,’ ‘endomysial antibody,’ and ‘prevalence’ for studies published from January 1991 through March 2016. 
    The team cross-referenced each article with the words ‘Asia,’ ‘Europe,’ ‘Africa,’ ‘South America,’ ‘North America,’ and ‘Australia.’ They defined celiac diagnosis based on European Society of Pediatric Gastroenterology, Hepatology, and Nutrition guidelines. The team used 96 articles of 3,843 articles in their final analysis.
    Overall global prevalence of celiac disease was 1.4% in 275,818 individuals, based on positive blood tests for anti-tissue transglutaminase and/or anti-endomysial antibodies. The pooled global prevalence of biopsy-confirmed celiac disease was 0.7% in 138,792 individuals. That means that numerous people with celiac disease potentially remain undiagnosed.
    Rates of celiac disease were 0.4% in South America, 0.5% in Africa and North America, 0.6% in Asia, and 0.8% in Europe and Oceania; the prevalence was 0.6% in female vs 0.4% males. Celiac disease was significantly more common in children than adults.
    This systematic review and meta-analysis showed celiac disease to be reported worldwide. Blood test data shows celiac disease rate of 1.4%, while biopsy data shows 0.7%. The prevalence of celiac disease varies with sex, age, and location. 
    This review demonstrates a need for more comprehensive population-based studies of celiac disease in numerous countries.  The 1.4% rate indicates that there are 91.2 million people worldwide with celiac disease, and 3.9 million are in the U.S.A.
    Source:
    Clin Gastroenterol Hepatol. 2018 Jun;16(6):823-836.e2. doi: 10.1016/j.cgh.2017.06.037.

    Jefferson Adams
    Celiac.com 06/16/2018 - Summer is the time for chips and salsa. This fresh salsa recipe relies on cabbage, yes, cabbage, as a secret ingredient. The cabbage brings a delicious flavor and helps the salsa hold together nicely for scooping with your favorite chips. The result is a fresh, tasty salsa that goes great with guacamole.
    Ingredients:
    3 cups ripe fresh tomatoes, diced 1 cup shredded green cabbage ½ cup diced yellow onion ¼ cup chopped fresh cilantro 1 jalapeno, seeded 1 Serrano pepper, seeded 2 tablespoons lemon juice 2 tablespoons red wine vinegar 2 garlic cloves, minced salt to taste black pepper, to taste Directions:
    Purée all ingredients together in a blender.
    Cover and refrigerate for at least 1 hour. 
    Adjust seasoning with salt and pepper, as desired. 
    Serve is a bowl with tortilla chips and guacamole.

    Dr. Ron Hoggan, Ed.D.
    Celiac.com 06/15/2018 - There seems to be widespread agreement in the published medical research reports that stuttering is driven by abnormalities in the brain. Sometimes these are the result of brain injuries resulting from a stroke. Other types of brain injuries can also result in stuttering. Patients with Parkinson’s disease who were treated with stimulation of the subthalamic nucleus, an area of the brain that regulates some motor functions, experienced a return or worsening of stuttering that improved when the stimulation was turned off (1). Similarly, stroke has also been reported in association with acquired stuttering (2). While there are some reports of psychological mechanisms underlying stuttering, a majority of reports seem to favor altered brain morphology and/or function as the root of stuttering (3). Reports of structural differences between the brain hemispheres that are absent in those who do not stutter are also common (4). About 5% of children stutter, beginning sometime around age 3, during the phase of speech acquisition. However, about 75% of these cases resolve without intervention, before reaching their teens (5). Some cases of aphasia, a loss of speech production or understanding, have been reported in association with damage or changes to one or more of the language centers of the brain (6). Stuttering may sometimes arise from changes or damage to these same language centers (7). Thus, many stutterers have abnormalities in the same regions of the brain similar to those seen in aphasia.
    So how, you may ask, is all this related to gluten? As a starting point, one report from the medical literature identifies a patient who developed aphasia after admission for severe diarrhea. By the time celiac disease was diagnosed, he had completely lost his faculty of speech. However, his speech and normal bowel function gradually returned after beginning a gluten free diet (8). This finding was so controversial at the time of publication (1988) that the authors chose to remain anonymous. Nonetheless, it is a valuable clue that suggests gluten as a factor in compromised speech production. At about the same time (late 1980’s) reports of connections between untreated celiac disease and seizures/epilepsy were emerging in the medical literature (9).
    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.

    Jefferson Adams
    Celiac.com 06/14/2018 - Refractory celiac disease type II (RCDII) is a rare complication of celiac disease that has high death rates. To diagnose RCDII, doctors identify a clonal population of phenotypically aberrant intraepithelial lymphocytes (IELs). 
    However, researchers really don’t have much data regarding the frequency and significance of clonal T cell receptor (TCR) gene rearrangements (TCR-GRs) in small bowel (SB) biopsies of patients without RCDII. Such data could provide useful comparison information for patients with RCDII, among other things.
    To that end, a research team recently set out to try to get some information about the frequency and importance of clonal T cell receptor (TCR) gene rearrangements (TCR-GRs) in small bowel (SB) biopsies of patients without RCDII. The research team included Shafinaz Hussein, Tatyana Gindin, Stephen M Lagana, Carolina Arguelles-Grande, Suneeta Krishnareddy, Bachir Alobeid, Suzanne K Lewis, Mahesh M Mansukhani, Peter H R Green, and Govind Bhagat.
    They are variously affiliated with the Department of Pathology and Cell Biology, and the Department of Medicine at the Celiac Disease Center, New York Presbyterian Hospital/Columbia University Medical Center, New York, USA. Their team analyzed results of TCR-GR analyses performed on SB biopsies at our institution over a 3-year period, which were obtained from eight active celiac disease, 172 celiac disease on gluten-free diet, 33 RCDI, and three RCDII patients and 14 patients without celiac disease. 
    Clonal TCR-GRs are not infrequent in cases lacking features of RCDII, while PCPs are frequent in all disease phases. TCR-GR results should be assessed in conjunction with immunophenotypic, histological and clinical findings for appropriate diagnosis and classification of RCD.
    The team divided the TCR-GR patterns into clonal, polyclonal and prominent clonal peaks (PCPs), and correlated these patterns with clinical and pathological features. In all, they detected clonal TCR-GR products in biopsies from 67% of patients with RCDII, 17% of patients with RCDI and 6% of patients with gluten-free diet. They found PCPs in all disease phases, but saw no significant difference in the TCR-GR patterns between the non-RCDII disease categories (p=0.39). 
    They also noted a higher frequency of surface CD3(−) IELs in cases with clonal TCR-GR, but the PCP pattern showed no associations with any clinical or pathological feature. 
    Repeat biopsy showed that the clonal or PCP pattern persisted for up to 2 years with no evidence of RCDII. The study indicates that better understanding of clonal T cell receptor gene rearrangements may help researchers improve refractory celiac diagnosis. 
    Source:
    Journal of Clinical Pathologyhttp://dx.doi.org/10.1136/jclinpath-2018-205023

  • Forum Statistics

    • Total Topics
      110,244
    • Total Posts
      949,709
  • Member Statistics

    • Total Members
      77,440
    • Most Online
      3,093

    Newest Member
    Jessica08
    Joined
  • Popular Now

  • Topics

  • Posts

    • Thanks for the kind thoughts. The test results I got back a few comments ago and I said what they were which was negative on everything. I just don't think it's celiac but something that created this domino affect. I plan on going to my regular doctor because honestly I feel the GI one was useless. When I told her back in Feb that I wasn't sure I'd be able to have the colostomy and endo she said "well then we won't be able to help you". 😕 The peanut butter I bought was organic . I had looked at the Aldi brand which I never had any issues with and it had soy so that's why I looked for a brand that didn't have any soy. I haven't had chocolate since February either due to the soy. I hadn't eaten anything but fresh fruit, vegetables, Chicken or fish since mid Feb. I did have some dried fruit which I seemed ok with but now the last two days I've gotten gas from that :(. I did have prunes awhile back and they also gave me gas which never happened before. I rarely eat prunes as it as always done the opposite of what it commonly is used for .
    • Sounds like the blood test is useless in your case.  Some times people have elevated antibodies for a few months after gluten-free.   The tests have a range for normal because it is normal to have  those numbers.  Two months from now, they may be slightly different.  There are other things that can cause low levels on these tests.  
    • Thank you for your help! Now I am beginning to understand more about this disease.  
    • Becca4130, Cyclinglady is right.  Most have those genotypes but they have found other gene types that doesn't always fit that mold. I haven't always known this (and I am not good at gene tests) I having only been diagnosed on blood serology alone. This verywell article explains it well. https://www.verywellhealth.com/hla-dq8-one-of-the-main-celiac-disease-genes-562571 depending on your ethnicity you might not type out well depending on where your ancestors are from. see their (verywell) paragraph about DQ8 variability by regions of the world. Be your own advocate your nutritionist is right to be cautious. see also this research about variations in genotyping can cause certain world/countries population to fail to show a positive gene typing depending on the region DQ2/DQ8 prevalence in the population mainly in Japan according to verywell. But it has shown up in people of Brazilian (assumingly) Portuguese ancestors as well (different gene typing). https://www.ncbi.nlm.nih.gov/pubmed/21484038 In their conclusion they noted in a subset of brazilians at least the wrong Regional gene typing test (American or European) might effect someone's test's causing a negative gene typing test. quoting CONCLUSIONS: "In this study, celiac disease was associated with the genotypes DQ2 and DQ8. DQ2 predominated, but the distribution of the frequencies was different from what has been found in European populations and was closer to what has been found in the Americas. The high frequencies of the HLA genotypes DQ2 and DQ8 that were found in first-degree relatives would make it difficult to use these HLA genotypes for routine diagnosis of celiac disease in this group." Assuming you don't have any of this mitigating factors then it is uncommon to be diagnosed as celiac disease without these gene types. You might only be able to get the more vague NCGS diagnosis.  But do a month food allergy elimination diet then when you re-introduce you will know if gluten is the culprit. You won't have to get  a doctor's confirmation of what your body already knows. Here is one more research article but a little older so there is probably newer research that might replace it. that might answer your question entitled "HLA-DQ typing in the diagnosis of celiac disease" https://www.ncbi.nlm.nih.gov/pubmed/11922565 I hope this is helpful. ******This is not medical advice. 2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things” this included. Posterboy by the Grace of God,  
    • I would put my money on a latex allergy or intolerance.  You can not even bring latex balloons into the hospital anymore, just the Mylar ones.  Did you call to confirm the “gel”.  It makes not mention of a gel on the Amazon or Costco website.  
  • Blog Entries

  • Upcoming Events