Russ H
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Celiac.com - Celiac Disease & Gluten-Free Diet Support Since 1995
Posts posted by Russ H
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Interesting study on gluten cross-contamination. Biggest risk from pasta water, pots and utensils. Toasters surprisingly not!
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3 minutes ago, olioil said:
Thank you Russ and also everyone else in the thread! I'll definitely cut out oats, and I'll be patient when waiting for symptoms to subside. I read about celiacs feeling better "immediately" which scared me that I was doing something wrong, but it makes me feel a lot better that it takes a while for everything to calm down. I'll take oats out and be cautious about cross contact while trying to heal. Seriously appreciate the advice from everyone.
I have a diary somewhere but if I recall correctly, I began to notice an improvement after about 2 weeks, but that is a slight improvement. The major one was 3 months in.
I think I had it for at least 45 years prior to diagnosis. I am 3 years in and I think I am still recovering. Most of the recovery was in the first year, by which time I was back on the rails and functional, if a little traumatised by the experience. The dietary restrictions are quite tough practically and socially. Breadth and severity of symptoms vary hugely between individuals.
It is definitely worth taking a good multivitamin for the first year at least as most people on diagnosis have at least one vitamin/mineral deficiency.
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On 8/25/2024 at 4:29 PM, carolcat said:
I was wondering about that but then guess since it mostly is asymptomatic then it never acted up enough to make me think about getting checked, and all those years flew by.
Thank u for bringing that up.
You might notice that you were actually symptomatic but you were just habituated to the symptoms. I had all kinds of strange signs and symptoms that just disappeared such as red thickened skin on knees and elbows, chilblains, body odour, tendonitis and a heart arrhythmia amongst others.
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1 hour ago, olioil said:
Hi Scott,
Thanks for your kind reply. I have a follow-up appointment with my GI pretty soon so I'll try and speak with them regarding those deficiencies. Maybe I can get tested or I can look into good supplements that are totally gluten-free.And to the best of my knowledge, I am 100% gluten-free. I tried to do as much research as possible to make sure I'm not getting any cross contact, but I am in a shared kitchen so I can only control my own actions. I have only been 100% gluten-free for around a week or two though (For like another week beforehand I was gluten-free but still using shared kitchen equipment). I guess it's too early to tell anything, it's just disheartening to feel worse after trying to put effort into being gluten free.
The generally accepted as safe level of gluten for people with coeliac disease is 10 mg (although some people are more sensitive and some people less). This is equivalent to a piece of bread the size of a small pea. Even with shared utensils, you can prepare safely so long as you make sure everything is clean. Stainless steel and non-stick pans are easy to keep clean. Don't share unglazed cast iron cookware as the rough surface traps food. Don't share the toaster - use toasting pouches if you have to. Also, watch out for forks and make sure to clean between the tines.
People with active coeliac disease often react to other foods because the gut barrier is damaged and also because the antibodies to gluten they make as part of the disease can cross-react to other foods. This reaction generally fades as the gut heals and antibody levels falls but this can take a year or more. Note that you can still have coeliac antibodies but they remain in the gut wall without escaping into the bloodstream, so causing a negative blood test.
It took 3 months for my bloating, burping and reflux to resolve, other symptoms even longer.
Edit: Definitely cut out oats. When the disease has fully gone into remission, try reintroducing them to see if you react. In most people (90-95%) oats don't trigger the coeliac disease immune response. However, the antibodies generated by consuming gluten do cross react with oat protein (avenin). You need to wait until the disease has gone into remission to find out whether you react to oats.
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This is totally false. Gluten is the name for the protein found in wheat, barley and rye flour. When wheat flour is worked into dough, it is the gluten that makes it stretchy and elastic. Adding oil may alter the properties of the flour when it is worked, but it won't affect the actual gluten content.
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It may be worth getting yourself tested for coeliac disease as a 1st degree relative of someone with the condition has an increased chance of having coeliac disease (about 10%).
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6 hours ago, trents said:
Is he consuming dairy? About 10% of celiacs react to the protein casein in dairy like they do the protein gluten in wheat/barley/rye. The structures are very similar.
My understanding is that this is a cross-reaction - people with active coeliac disease generate antibodies that cross-react to milk proteins amongst other things. However, the cross-reaction does not drive coeliac disease, and when gluten is excluded and the antibodies fade out, the cross reaction disappears.
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An optimistic article from the journal Nature about emerging therapies for autoimmune diseases.
Nature: Can autoimmune diseases be cured? Scientists see hope at last
QuoteAfter decades of frustration and failed attempts, scientists might finally be on the cusp of developing therapies to restore immune ‘tolerance’ in conditions such as diabetes, lupus and multiple sclerosis.
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I thought this clinical review might be of interest. Coeliac disease followed by seronegative coeliac disease are the most common causes of villi flattening. Other causes include idiopathic sprue, drug-associated enteropathy, peptic duodenitis and helicobacter among 20 or so known conditions.
Not All That Flattens Villi Is Celiac Disease: A Review of Enteropathies
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23 hours ago, lmemsm said:
20 minutes isn't bad for a bread recipe. It's been taking me much longer for the gluten-free ones I've tried so far. That was one reason I wanted to see if I could use the bread machine for this, to speed things up. I read substituting powder for psyllium husk isn't one to one. I've seen a figure of 85% in a few places. Thought this was a helpful article: https://theloopywhisk.com/2021/10/23/psyllium-husk-101/
Thanks for the link. I follow a low sodium diet, so baking my own bread is unavoidable. I use lo-salt, which is 2/3 potassium chloride and 1/3 sodium chloride. Doesn't affect the dough rise and gives normal flavour to the bread.
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8 minutes ago, lmemsm said:
Thanks for the tips on psyllium husk. I'll have to look for the whole husk. I'm using the powder from nuts.com. Haven't noticed a color change from it. It'll be interesting to try the whole powder and see how the results compare.
I think it might be to do with whether the pure husk or more of the seed is used to make the powder. I tried powdering the husks in a small coffee grinder but they absorbed too much water and the mix became dry, then I added water and it didn't bake as well. The recipe I linked to above is quite time consuming to prepare but makes really nice bread. I have played around with it a bit - I don't use flax but I add 75g (3 oz) of mixed seeds. I beat 3 large eggs and add milk to make 510g. I use digital scales for all ingredients. Takes me 20 minutes to mix up and clean up. Luckily I don't seem to react to pure oats.
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In the UK, NICE guidelines state that people with type 1 diabetes should be offered testing for coeliac disease on diagnosis as they share a common genetic predisposition.
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On 1/22/2024 at 4:18 PM, lmemsm said:
I ended up buying the Panasonic. Am having trouble finding bread recipes that I'd like to try in it. I did find one that I thought came out better than the commercial gluten-free bread I've tried: https://www.cookingwithcamilla.com/vegan-gluten-free-bread-machine-loaf/ Still looking for others that use ingredients I don't have issues with. It's not as easy to make gluten free bread in a bread machine as it is to make regular bread, but it does seem easier than making the bread completely from scratch.
Try the Gluten Free Alchemist website I linked to above. She has quite a few recipes. I found the key thing to replace gluten is psyllium seed husk. You have to get the right type of psyllium - don't get powder, get whole husk. I have found the powder turns purple when baked, it also absorbs lots of water and is difficult to get the recipe right. You need whole 'golden' husk. The one I use is below:
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That is very interesting. It look like anti-tTG3 antibodies originating in the gut bind to tTG3 in the skin, forming complexes. Iodine leads to structure alterations promoting aberrant behaviour of tTG3 and promotion of disease activity.
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1 hour ago, Raquel2021 said:
I completely undertand. It took me months to realize it was the eggs and dairy causing my paresthesia but eliminated them out of desperation. Lastly my endocrinologist told me Hashimotos patients do better with no iodized salt but I didn't listen as I know iodine is needed but as I said that was what made the difference. Basically I am on a low iodine diet as iodine is in everything. Just eggs, dairy and iodized salt are big on iodine.
Do your own research. Iodine affects patients with DH.
Eggs and oats won't raise tTG2 antibodies. Are the oats certified gluten free?
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On 1/5/2024 at 5:44 AM, Berkan said:
Hey! I just checked my results now before I go to my doctor appointment again and I just saw my
Anti-Gliadin Ab.IgG is 35. but all the others are low. I had all the symptoms of celiac, that's why
doctor wanted that. All I want to ask to you guys, is 35 something to concern?
It is certainly worth following up if your have persistent symptoms. Was your total IgA measured as part of the coeliac screening test?
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On 1/5/2024 at 5:44 AM, Berkan said:
Hey! I just checked my results now before I go to my doctor appointment again and I just saw my
Anti-Gliadin Ab.IgG is 35. but all the others are low. I had all the symptoms of celiac, that's why
doctor wanted that. All I want to ask to you guys, is 35 something to concern?
You have isolated positive anti-DGP: in the absence of a person having IgA deficiency, this has poor positive predictive value for coeliac disease - 15.5% (95% CI 8.5–25.0%). This is because it is not unusual for people without coeliac disease to have DGP antibodies.
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I agree with Scott and Trents. It is concerning that your GI specialist is totally wrong regarding the necessity to keep eating gluten prior to the blood test - this is basic stuff.
- DebJ14 and Scott Adams
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I have drunk this beer without issue although people vary in their sensitivity to gluten. This beer is a barley lager that is treated with an enzyme such as Clarex to degrade any gluten remaining after the brewing process and then batch tested to verify that it is less than 20 parts per million gluten. The enzyme attacks the proline groups in gluten molecules - that parts that human gut enzymes cannot break down. Supposedly, the remaining fragments do not contain any epitopes that coeliac disease reacts to.
There are some beers that are totally gluten free. I don't know if you can get them where you live but Greens make some great ones.
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I was plagued with body odour since childhood and it disappeared when I began following a strict gluten free diet. It returned when I went back on gluten for testing. I had to change my clothes several times a day and used to scrub myself so much in the shower that I developed dry skin and eczema. I have read several people reporting strong body odour with coeliac disease although it seems to be a less common symptom.
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Yes. You can make much better bread than you can buy. Some of the recipes are quite time consuming and convoluted but make excellent bread. I have a Panasonic - they are great bread machines. You can often get one on offer on Amazon or other outlets. Then you can try this and other recipes:
https://www.glutenfreealchemist.com/gluten-free-bread-machine-recipe-bread-maker/
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On 11/10/2023 at 5:44 PM, ballerina96 said:
Hello! New user here (27F, 5'7" 125lbs). My PCP recently ordered me a full celiac panel based on the symptoms I described during my physical. My symptoms include digestive issues (bloating, gas, irregular BMs), heartburn (have had times where it has been so bad I've vomited, like after pizza), frequent canker sores (sometimes more than 1 at a time), anixety, and skin issues (redness and dozens of tiny whiteheads that appear on my face a day or so after eating gluten + sugar heavy foods).
Here are results:
- Tissue Transglutaminase IgA Ab = < 1 (not detected)
- Tissue Transglutaminase IgG Ab = < 1 (not detected)
- Gliadin (Deamidated Peptide) AB, IGA = < 1 (not detected)
- Gliadin (Deamidated Peptide) AB, IGG = 57 - HIGH (value interpretation: > or = 15 Antibody detected)
- Immunoglobin A (IgA) = 93 (Normal range 47-310)
- Red Blood Count = 3.85 (Normal range: 3.8-5.1)
- Hemoglobin = 12.6 (Normal range: 11.7-15.5)
My doctor followed up with the message: "Your testing suggests celiac disease. I am making a referral for you to see a gastroenterologist for an endoscopy." He also said the rest of my blood work looks good.
I've read mixed/ confusing things on the DGP IGG results - what does an isolated positive mean? Why would I be negative in the other categories? Do you think it's likely I have celiac or just NCGS or another autoimmune issue? Or potentially 'early stage' celiac?
It's also worth nothing that I eat very healthy/whole foods and eat gluten free around 85% of the time, but sometimes I'll 'cheat' on the weekends like going out to dinner.. In which case I know I'll pay the price in stomach issues, breakouts etc. Since I wasn't planning on getting tested for celiac when I went to my annual physical, and the lab test was only 5 days later, I only had 5 days to fill myself with gluten haha.
My GI follow up appointment is in a month but curious to hear if anyone has had similar results and can shed light. Appreciate any insight. Thank you!
The proteins in wheat are problematic because mammals cannot completely digest them and large fragments remain as they pass through the gut. A fragment of one of the proteins called gliadin binds to an enzyme found in the gut called tissue transglutaminase (tTG2) and forms a highly immunogenic complex - in this process it loses an amide group and become positively charged, hence 'deamidated gliadin peptide or DGP'. Coeliac disease is a specific immune reaction to the complex which generate antibodies both to DGP and to tTG2. However, it is common for people without coeliac disease to have antibodies just to DGP. Hence, isolated DGP has very poor specificity for coeliac disease. This does not mean that you don't have coeliac disease or NCGS, it just means that the results are not conclusive and merit further investigation, especially considering your symptoms. (If, for example, you had 10x the standard range for tTG2, you would almost certainly have coeliac disease.)
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21 hours ago, Wheatwacked said:
The bitters might increase your stomach acid, but maybe not so good for you.
Yes, Angostura bitters contain gentian root, which is alleged to help digestive problems in herbal medicine. There is no evidence that they help and could well antagonise a sensitive stomach.
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5 hours ago, ShelbyE720 said:
Meanwhile I had asked for the genetic testing to be really sure and to my surprise, I was negative for the genes associated with Celiac. My doctor then said “there’s no way it is Celiac Disease, maybe you improved bc you are just Gluten sensitive and just stay gluten-free if it helps”
You certainly can have coeliac disease while not having the common HLA types although it is not common - about 1% of people with coeliac don't have the common HLA types.
Confusing results
in Celiac Disease Pre-Diagnosis, Testing & Symptoms
Posted
Those serum tests are for total immunoglobulins in each class (IgA and IgM) and are not specific to coeliac disease. You need the test results for antibodies to tTG2, which is a very sensitive test for coeliac disease. I would follow your doctor's advice.