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Recently Diagnoised With celiac disease

Joe

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Joe Newbie
Joe
Posted

I have been on the" gluten free diet' for two weeks and signs of recovery has started. I saw a dietitian today and she was amazed at the knowledge I had in such a short time. Thanks to this website and several others I have visited I can now relate to others who are further down the road than I am.

I have tried making my own bread using the approved flower mixtures and lists of approved ingredients. It tastes awful and I" toasted it" to hide the taste. Am I doing something wrong or is this the best it gets?

What is the average time for the skin blisters and rashes I have to disapear quietly into the night! My scalp is a battlefield and I have been using a medicated shampoo for the last two weeks with no change. I need some help to locate the best product available to win then war and return my scalp to normal!!

I am brand new at this and hope my questions make some since and that I get some helpful advice soon!

This site has a lot to offer celiacs who need to learn what it takes to get healthy and stay that way! I am a 60 year old male who's body is not willing to give up the fight!! Go Irish!

jkelly2315

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teebs in WV Apprentice
teebs in WV
Posted

Hi Joe. Glad you are starting to feel better. There is a prescription - Dapsone - that has definitely helped me, as well as many others. However, there are side-effects and you need to have your bloodwork monitored while you are taking it. I have been taking it since October and my breakouts started clearing up after just a couple of days. This, in conjunction with a gluten-free diet should make you feel soooooooooo much better!

There are also other medications available, but I have not tried them. Without medication, it can take up to 6 months to completely clear (from what I have read, and I am by no means an expert). Others on here will chime in and give you some good advice.

As far as the bread goes, I haven't found any that I think are good. I tried another one this weekend - one that I have seen several people rave about - and I didn't like it. I would rather go without than eat that stuff! But, I hear that you do get used to it - I'm just not there yet.

Good luck to you - and welcome!

mamaw Community Regular
mamaw
Posted

Hello

Stick to it and as time goes on you will begin to feel better & better......

I love the bread mix from breads by anna. It's not towntalk white but an earthy bread. I make it in a bread maker....Also Glutino makes good bagels, Everybody Eats in Brooklyn has the most wonderful crusty rolls and baguettes in the world but pricey. I have to mailorder almost everything as thee is not much where I live in western Pa.....I use betty hagman four bean flour when making cookies and sweet breads with no changes to my old wheat recipes...

I have been researching by trial & error and have spent alot of money doing it but I now know where to buy the best food stuff at there....

Its a shame the US is so far behind other countries on this issue........ We have four of us eating gluten-free - 2 are under 7 yrs old so I try to keep their interest peaked with new goodies.

mamaw

lhasapets@zoominternet.net

nettiebeads Apprentice
nettiebeads
Posted

Be sure to check all of your toiletries for gluten. A lot of the lotions that promote soothing have oat in them. Quite a few have wheat, wheat germ or wheat starch. Did you get yourself a dedicated toaster? I now have one, a Christmas present from my MIL. And check ALL labels. Since the new labeling law went into effect I'm finding that lots of things I thought were safe are "made in a facility that also processes wheat" :angry::angry::angry:

Give yourself time. It takes awhile for the damage to occur, so likewise it takes time to heal. And since everyone's physiology is different, everyone has different healing rates. Just keep at it.

Annette

Joe Newbie
Joe
Posted
  • Author

Be sure to check all of your toiletries for gluten. A lot of the lotions that promote soothing have oat in them. Quite a few have wheat, wheat germ or wheat starch. Did you get yourself a dedicated toaster? I now have one, a Christmas present from my MIL. And check ALL labels. Since the new labeling law went into effect I'm finding that lots of things I thought were safe are "made in a facility that also processes wheat" :angry::angry::angry:

Give yourself time.

I want to thank you for your reply to my questions and concerns. Everyday is a new adventure for me as I wair for new dvelopments with this disease. I am dizzy, somewhat confused and my strength is not what it should be. I know in time with this medication I will eventually turn the corner but it's the wait time that is frustrating me.

I have open mind and willing to stay on the gluten free diet becuase once this disease is under control I do not want to go backwards! My family is suupporting me and will do whatever it takrs tom make me feel better about my condition.

I go for my third blood test tomorrow and hopefully I will be improving. My Dr. diagnoised the disease right away and got me started on the road to recovery. I have confidence in him but will get a second opinion and new testing next month just as a backup! If I am to be on this diet for life I want all test data to be confirmed by two different Drs. and labs. I will feel better knowing this!

Live long and prosper!

Joe

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    • jimmydee
      I think a UTI caused by Aspirin, made me a Celiac

      By jimmydee · Posted

      Thank you for the information Trents!  
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    • trents
      I think a UTI caused by Aspirin, made me a Celiac

      By trents · Posted

      Welcome to the forum, @jimmydee! Celiac disease is an autoimmune disorder, meaning the consumption of gluten triggers a response by the immune system that causes the body to attack it's own tissue. Celiac disease has a genetic base that requires some kind of trigger for the genes to be turned on. We know that there are two primary genes responsible for providing the potential to develop celiac disease and we know that about 40% of the population carries one or both of these genes. However, only about 1% of the population actually develops celiac disease. So, that tells us that something more than just having the genes is necessary in order to develop celiac disease. Something must trigger those genes to wake up and produce the active disease. It's that "something" that we are struggling to understand and that is somewhat of a mystery. But there is a growing body of evidence pointing to the culprit being a disruption of the proper balance of microorganisms in the gut. Apparently, the microorganisms that live in our intestines produce chemicals that regulate the size of the openings in the mucous lining of our small bowel. A disruption in the healthy balance of this microorganic community causes an increase in the size of the openings in the mucous lining. This in turn allows protein fragments from the food we eat that are larger than normal to invade the mucous lining where they are detected as threats by the immune system. This is what is happening with gluten for those with celiac disease. The attack in the mucous lining of the small bowel by the immune system on these incompletely broken down gluten components causes inflammation and, over time, as we continue to consume gluten, it damages the mucosal lining of the small bowel which results in the loss of efficiency of nutrient absorption. This mucosal lining is made up of millions of tiny finger like projections that create an enormous surface area for the absorption of nutrients when healthy. The "wearing down" of these millions of finger-like projections due to celiac inflammation greatly reduces the surface area and thus the ability to absorb nutrients. This in turn typically results in numerous health issues that have a nutrient deficiency base. But the answer to the question of why there seems to be an epidemic of celiac disease in recent years may not be simple. It may have many facets. First, we don't know how much of this epidemic is real and how much is apparent. That is, how much of what we perceive of as a dramatic increase in the incidence of celiac disease is simply due to greater awareness and better detection methods? Celiac disease is not new. There is evidence from ancient writings that people suffered from it back then but they did not have a name for it. And it wasn't until WW2 that gluten was identified as the cause of celiac disease. Current thinking on what is causing imbalance in gut biology has put forth a number of causes including overuse of antibiotics and pesticides, environmental toxins, fluoridation of drinking water, preoccupation with hygiene and sanitation, and the western diet. https://www.celiac.com/celiac-disease/theories-on-the-growing-prevalence-of-celiac-disease-and-gluten-sensitivity-over-the-last-half-century-video-r6716/?tab=comments#comment-25345 All this to say that I doubt your UTI or the low dose aspirin had anything to do with the onset of your celiac disease. It was probably just coincidence unless the UTI was the stress trigger that activated the celiac potential genes. The onset of celiac disease an happen at any stage of life and many people report it following a period of illness. But what is interesting about your low dose aspirin theory is that aspirin is in a class of medications known as NSAIDs (Non Steroidal Anti Inflammatory Drugs). Scientific studies have shown that long term use of NSAIDs can damage the villous lining of the small bowel in the same way as celiac disease.  The other thing I wish to point out is that unless you have actual testing done for celiac disease, you can't be sure if you have celiac disease or NCGS (Non Celiac Gluten Sensitivity). They share many of the same symptoms, the difference being that NCGS doesn't damage the lining of the small bowel. There is no test for NCGS, celiac disease must first be ruled out. NCGS is 10x more common than celiac disease. The antidote for both is a gluten free diet.
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    • jimmydee
      I think a UTI caused by Aspirin, made me a Celiac

      By jimmydee · Posted

      Let me start by saying that I am self- diagnosed Celiac. I didn't want to pay for tests, because I don't have health insurance and the doctor said I would HAVE to eat gluten for the tests and I am afraid it will kill me. I diagnosed myself by quitting dairy, sugar and gluten for a couple weeks and figured out the problem by process of elimination.  ANYWAYS.......here's why I blame "Aspirin low dose safety coated" for my Celiac Disease.  I started taking regular Aspirin for a couple weeks for back pain and decided to switch to low dose safety coated Aspirin because I thought a smaller dose was safer for regular use. Well about 3 days after starting low dose safety coated aspirin, I got a terrible UTI. I didn't know what to do (should have gone to doctor) I started taking cranberry pills and read Aspirin can cause UTIs, so stopped taking that. A week later, the UTI was getting worse but then my Dad gave me some probiotic pills and the next day I felt better, so I took those for a week and the UTI was gone. About a week later, I bought my family cake and pizza for a birthday party. I ate a whole bunch and there was some leftover the next day, so I ate a bunch again. Welp, that was my first Gluten attack. I was home alone and almost called an ambulance, my stomach was so full of gas I couldn't breathe, I was covered in sweat and thought I was having a heart attack.  Since quitting Gluten I haven't had the "gas attacks" or had the awful constipation that lasts 3 days. So I'm certain I'm Celiac and I absolutely blame low dose safety coated Aspirin, I think it's the time release binder that is the problem, because I was fine with regular aspirin, I was just breaking those into halves or quarters. Actually now that I think about it I may have even used the regular aspirin at other times in my life before that, just not the little low dose safety coated Aspirin, that's what I think caused it. What's weird is my Dad took the low dose safety coated Aspirin for years and years, for it's reported heart benefits, and he never got Celiac.  Anyways, I felt this was important to share, so they can find the cause of this disease, which seems to be affecting more people than ever before. At least Gluten Free Pizza exists, that's been my new staple food in my diet.         
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