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nicoleashley

Afraid Yet Optimistic, For My Husband

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The biopsy was only taken from four places in the duodenum, as the GI doctor didn't see any gross signs of inflammation anywhere except the esophaugus.

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oh and his CMP is always normal. We get a CBC, CMP, and fasting lipid panel every year. In addition my husband had a sedrate and rheumatoid factor about 6 months ago, sed rate was normal, rheumatoid was negative as usual.

Despite the fact that he weighs 260lbs his cholesterol levels are always perfect, lower than mine. his liver function is normal, electrolytes and kidney function are always fine as well.

EDIT: His GI follow up is on december 4th. If the doctor agrees the the blood panel you listed, will remaining gluten free until that point effect the results?

Also, when you listed the tests, what does Bs stand for?

Bs, D, K, Iron, Ferritin, Copper and Zinc

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All good...would still suggest completing his celiac blood work and nutrient testing. Does his weight match his diet/exercise levels? I ask because some of us have unexplained weight gain rather than weight loss with Celiac Disease. I was deficient in many nutrients despite all other tests being "normal" for decades.

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Just watched that video, wow what an eye opener!

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Please take a peek at the Australia/New Zealand thread--they mention lots of special treats that are gluten free and can be found in Australia. Personally, I LOVE the Butterfingers shortbread cookies...and there's a shortbread cookie that's orange flavored with chocolate frosting that I adore. My daughter ships these home to me for the holidays.

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oh and his CMP is always normal. We get a CBC, CMP, and fasting lipid panel every year. In addition my husband had a sedrate and rheumatoid factor about 6 months ago, sed rate was normal, rheumatoid was negative as usual.

Despite the fact that he weighs 260lbs his cholesterol levels are always perfect, lower than mine. his liver function is normal, electrolytes and kidney function are always fine as well.

EDIT: His GI follow up is on december 4th. If the doctor agrees the the blood panel you listed, will remaining gluten free until that point effect the results?

Also, when you listed the tests, what does Bs stand for?

Bs, D, K, Iron, Ferritin, Copper and Zinc

Yes, that would be too long guten free, get them done now. The Bs referred to would be B vitamins...

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Frieze is right...that would be too long. You can usually call either your Primary or the GI and explain that the Celiac Panel NEEDS to be run now as your husband has begun eating gluten-free and you will lose this data if you wait for your December appointment.

Yes, B12 is often checked for deficiency -- my celiac doc runs B1, B2, B6 and B12

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well I called the GI doctor and asked the receptionist about the tests that were suggested, that was two days ago and I still have not recieved a call back. They probably think I am neurotic to be asking to take all of these tests, but I just want to be complete. If there is any question that gluten could be causing these problems, why not go ahead and get the full evaluation?

I am trying to find a new primary, because I doubt our old ones capabilities at time. He wanted to put my husband on medicine for inflammatory bowl without even getting any tests done, I had to push for the GI consult, which come to find out, I don't need a referral to go to a specialist with my current insurance so he could've gone at any time, of course with a nonmedical background he just accepted what that physician said and didn't bother to ask any more. Even though his symptoms were not under control with the welchol.

EDIT- Also, no my husbands weight does not reflect his diet and activity levels. He has had his thyroid checked, always normal. When he was running on a daily basis and working out he got down to about 240. We do eat some junk food but overall we don't eat horrible compaired to some people. I have noticed that he does overeat though. After meals he is usually hungry, and many times he will not eat during the day becuase it will make him have to spend too much time on the toilet. It's not that he isn't hungry, but if he waits to eat until he gets home then he can just spend the rest of his night in the bathroom as opposed to it effecting his job.

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Just an update. Today he ingested wheat on accident. He ordered some naked wings while working and forgot to ask about tje sauce till after he ordered. It had wheat as an ingredient but he chose to eat It anyway. His stomach is in bad shape.now, gas, pain, and loose stool, which he told me is tan in color.

I am trying to gain as much info as possible to pass on to our GI doc , not trying to be gross , but it would seem to me that he reacted to the wingsauce with the wheat? His belly has been fine all week otherwise.

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It sounds like you have an answer already if he reacted to wing sauce so badly. I would stick with gluten free.

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Heard from the GI doc today, The lady on the phone said they will do a celiac panel which includes genetics testing and iron, she said the other vitamin tests I would have to get done from a primary care physician. So I am very excited about that, I would think the genetic testing would be more definitive?

Do you have to be eating gluten for the genetic testing? It has been a week and a half gluten free and my husband is already feeling so much better. He isn't taking any antiinflammatories for his hands for the past few days which is a miracle. He still has to run to the bathroom on occassion, like after eating a big meal, but I can tell it's not as bad because he isn't in there as long or as frequently. And his overalll mood is actually better.

Also took my kids to the pediatrician today for their asthma/allergy follow up. My daughter is 5 and has to get bloodwork for an allergy panel and she is the one who has issues with constipation and complaining of abdominal pain a lot, (after eating especially). So when I told her about my husband being worked up for celiac she said we might as well add the bloodwork in for the pediatric celiac panel since she is getting bloodwork done anyway. She said she has had some concerns about her abdominal pain and constipation but we have just been monitoring it so far and it hasn't gotten any worse. She does have a big appetite at times but and her BMI is on the higher end of normal. so I have the order and will be taking her to get the bloodwork done next tuesday.

My son, he is only 3, his asthma is under control with no wheezing issues recently. No upper respiratory problems and no GI symptoms. He had to have bloodwork done for allergy testing last year when his asthma was really bad. But she said since he is not symptomatic, he is growing normally, she doesn't want to subject him to the trauma of getting blood drawn again so soon. She said we will monitor him closely for symptoms and also signs of anemia. She did say though if anything comes up and he needs bloodwork for any reason then we can get it done at the same time. I agree with her, the poor kid already has been through so much with his asthma, and being a boy he has had stitches, so he is terrified of needles. She is an excellent pediatrician and I trust her completely.

Anyway, that is my update, just thought I would share. This whole thing has kind of thrown my world into a little bit of chaos. but let me tell you what else, it has opened up my eyes to our food industry. I am focused on cooking and preparing whole foods and yes it is a little more work, but I look at the health of the people in our society and I can't help but feel that the root of it is in what we put into our bodies. My grandma is 84 and still lives alone, drives herself, everything. She always had a garden, chickens, eggs, and a few cows so she could slaughter a steer every few years. The only health issue she has is mild osteoporosis, not bad since she had 6 kids, and she had an episode where her heart rate went to fast once (SVT). Her heart however is strong and healthy. I want to be just like her. :)

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UPDATE:

Followed up with the GI doc today. All of my husbands labwork is completely normal. The whole panel. He said he does not have celiac. He does however think he is sensitive to gluten given his positive response to a gluten free diet. Our doctor actually reccomended we read "wheat belly" and said that there is a theory that the protein in wheat causes systemic inflammation. He wants my husband to eat as many whole unprocessed foods as possible. He did however mention that he is going to label it as irritable bowl syndrome as a diagnosis. I am thankful for a diagnosis, thankful that it isn't celiac based on all of the other problems that can be related to that. Dealing with a sensitivity as opposed to a true allergen still won't be easy but he feels better and we are going to keep at it. Thank you all so much for the information here and the support.

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UPDATE:

Followed up with the GI doc today. All of my husbands labwork is completely normal. The whole panel. He said he does not have celiac. He does however think he is sensitive to gluten given his positive response to a gluten free diet. Our doctor actually reccomended we read "wheat belly" and said that there is a theory that the protein in wheat causes systemic inflammation. He wants my husband to eat as many whole unprocessed foods as possible. He did however mention that he is going to label it as irritable bowl syndrome as a diagnosis. I am thankful for a diagnosis, thankful that it isn't celiac based on all of the other problems that can be related to that. Dealing with a sensitivity as opposed to a true allergen still won't be easy but he feels better and we are going to keep at it. Thank you all so much for the information here and the support.

This is great news...most especially is your GI's analysis -- this is not common, but it should be.

Caution -- Non-Celiac Gluten Intolerance can be just as severe in the areas of cross-contamination. Your husband will likely know if he is sensitive to minute amounts of gluten after a solid 3-6 months gluten-free.

Congratulations on the good news...hang tough and check back in if you have questions or simply need to vent a bit.

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This is great news...most especially is your GI's analysis -- this is not common, but it should be.

Caution -- Non-Celiac Gluten Intolerance can be just as severe in the areas of cross-contamination. Your husband will likely know if he is sensitive to minute amounts of gluten after a solid 3-6 months gluten-free.

Congratulations on the good news...hang tough and check back in if you have questions or simply need to vent a bit.

yes, there is a reason I chose this particular doctor and there is a reason he was so difficult to get into. When the office offered for my husband to see another physician in the practice I refused, I said I would wait as long as it takes to get him in with this particular physician because I knew him from work and am a patient of his as well. I talk to a lot of GI doctors and this one has always impressed me with his knowledge base and view on medicine. He went through my husbands schedule and eating habits and made personalized reccomendations for his eating habits. I have been nagging my husband about his eating habits for years saying that it could be just that making him sick. When the doctor said everything that I have been saying for years, my husband actually listened and is following through. Eating breakfast, eating snacks throughout the day to keep from overeating at the end of the day, avoiding soda's, wheat, and dairy products, and most of all avoiding processed foods. Little things but IMPORTANT to anyone dealing with GI issues.

I deal with a lot of physicians and there are a select few that I truely trust and respect. I wish there were more.

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    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.
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    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. 
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    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.
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    Clin Gastroenterol Hepatol. 2018 Jun;16(6):823-836.e2. doi: 10.1016/j.cgh.2017.06.037.

    Jefferson Adams
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    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.
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    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). 
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    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.
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    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