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Sueps

Feeling Worse 1 Month Gf

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Hi all,

 

Having been diagnosed a month ago I am now on a gluten free diet, and feeling much worse than I did before!

 

Previously when I was eating gluten I had a mild upset stomach every week or two for a few hours at a time for the last 9 or 10 months. Before that I was fine. When I first cut out gluten I felt okay for a few days, but then started to get a bad stomach on and off. Now my stomach is constantly bloated and uncomfortable and I feel ill all the time. I'm losing alot of sleep as I always feel worse at 2am - 4am.

 

I have read that it may be cross contamination but if it is I don't understand why I feel so much worse that I did before changing my diet.

 

Unlike the original poster I am almost 60 and may have had the silent version for decades, so I've eaten lots of gluten in my time without feeling ill. I'm wondering whether I'd have been better off cutting down gradually. I'm tempted to eat some gluten to see if it will settle my stomach!

 

I go on holiday in 5 weeks, that is going to be a challenge without feeling so ill. Just hoping for a pep talk really!

 

Thanks in advance.

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Hi again,

 

Just to clarify, my post was supposed to be a reply to the "It was supposed to be over at gluten free! Help :( " discussion; don't know why it's been posted as a new topic as I clicked on "reply to this topic".

 

Thanks again to all who read my tale of woe.

 

Edit; kareng gave me my own topic, thanks. Will leave the above as it refers to the other topic I referenced.

Edited by Sueps

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Keep at it! Took me six weeks to get relief and I only got tummy issues during the actual diagnostic period (ate tons of gluten as a farewell). Do not go back to eating gluten.

Carpool time. Got to go.

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Have you read the newbie section under "Coping"? There are lots of tips to expedite healing -- like giving up dairy until your intestines heal.

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I actually think that even feeling worse is a good reaction.  I think it is because your body is actually working on healing.  I know it isn't comfortable, but many times I found my highest highs shortly followed after my lowest lows.

 

After a real long time traveling the opposite way, you have traveled one month in the right direction!  I am sure you have learned much about the diet and caring for yourself.  You have come here to help learn.  You have made progress even if you don't feel it yet.  I too saw decades of damage.  However, I am 2 years gluten free and feeling much better as I have for many months by now.  I wish you all the best in healing.

 

Dee

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the first month was hard.  The body detoxing is not fun. I would not have thought detoxing from gluten would be painful.  It was. 

But keep at it don't give up.  It gets better.  you will start feeling better after the frustration wears off. 

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the first month was hard.  The body detoxing is not fun. I would not have thought detoxing from gluten would be painful.  It was. 

But keep at it don't give up.  It gets better.  you will start feeling better after the frustration wears off. 

Thanks to all of you.

 

I have looked at the article on coping, and others in similar vein. I hope I don't have to stop eating dairy too, don't think I could manage without cheese, even for 6 months!

 

I just hope I feel better before I go away. My doctor has given me Buscopan to help with the stomach discomfort, but it can still get quite bad.

 

Anyway, thanks again for the support.

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For me, though gluten-free meant that a whole list of symptoms went away almost immediately, it took me another 3-4 months to figure out that I also had vitamin deficiencies. I got tested and once I started supplementing B12, my abdominal pain eased up and finally went away after a couple months. My pain seems to have been rather similar to yours, dipping in and out of being problematic and pain lasting for days or weeks at a time, probably related to my meat consumption.

I had other deficiencies as well due to the malabsorption and some are more difficult than others to get on top of. I think iron and vitamin D are also common deficiencies in malabsorption.

(Note: B12 levels below 400 can be symptomatic despite the U.S. minimum for "normal" being 200. Other countries have minimum levels of 400-500.)

If deficiencies aren't the problem, I suppose I'd go back to the drawing board and look for other food intolerances. And if you haven't kept of food diary yet, they are incredibly helpful for figuring out what foods are causing problems. 

After that, most of the problems that I turned up when I was researching my abdominal pain had to do with organs not functioning properly ... and lots of people sharing stories about surgeries that didn't help at all. Thankfully, my problems were solved with a bottle of supplements purchased at the grocery store. I do hope you find your solution soon and it is also that simple.

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Have you cut dairy out of your diet? About 50% of celiacs are lactose intolerant at diagnosis because the villi which makes lactase, that digests the milk's lactose, is not there. Many celiacs regain the ability to consume milk after 6 months or so, but many benefit from some time away from it while healing.  

 

I personally had gluten-like stomach  aches when I consumed dairy. After about one year I could eat some ice cream again.  At two years gluten-free, I am fine with all ice cream... and that's important to me!  LOL ;)

 

There could be other foods that are affecting you too.  Raw veggies? (Apples and pears are bad for me.) Night shades?  Perhaps try keeping a food and symptom journal to help you sort it out.  

 

I hope you feel well soon.

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Hi all, I'm resurrecting this as I'm still getting worse all this time later. My symptoms have never showed any signs of improvement, and I've gained more. I suspect I may have Sjogren's syndrome and am waiting for a lip biopsy for diagnosis.

The biggest problem I have now is that there doesn't seem to be anyone I can see who knows about all aspects of autoimmune conditions. Since I posted last I've had a colonoscopy, an endoscopy (found small hiatus hernia), I've seen an ENT specialist who told me to try nasal rinsing for my constant catarrh and phlegm in my throat, I've tried cutting out dairy and then an exclusion diet, and nothing has helped. I get stomach ache several times a week, sometimes it's really debilitating. I also get acid indigestion, tinnitus, fibroymyalgia (very mild), I'm still tired all the time and my brain is still foggy, dry mouth and eyes (this is what makes me suspect Sjogren's) random itching, several hot flushes a night, Raynaud's (mild), my limbs feel weak and my hips ache when going upstairs.

I went to the GP with this list and she referred me to a rheumatologist; but she only seemed interested in the dry eyes & mouth, Raynaud's (which I can cope with) and not much else. She said I'd have to see someone in gastro enterology about the stomach ache; so I'm going round in circles and getting really frustrated by it!

I'm thinking I may have to spend a lot of money to see a private autoimmune specialist as there doesn't seem to be anyone in the NHS who can cover it all; which is totally stupid as I think much of it is all connected.

If anyone in the UK has gone down this route I'd love to hear how you got on!

Just to clarify, I've read that Sjogren's can cause digestion problems by messing with the pancreas, and increased menopausal symptoms. I was on HRT in my 50's but decided that 10 years was enough. I'm now 64.

Edited by Sueps
Clarification

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I am sorry you are still ill.  That last endoscopy.  Did it reveal a healed small intestine?  If yes, then Celiac disease is probably not the culprit for your lingering issues. 

I suffered with gastric issues, hives and all kinds of issues from a gluten exposure two years ago.  I even went on the Fasano gluten-free diet (strict) for a few months without success.  A repeat endoscopy reveal autoimmune Gastritis and a healed small intestine.  Because I react (allergy) to so many medications, my GI is aware that I am not interested in medication (e.g. biologics, but I do take a thyroid hormone replacement) to treat my other autoimmune issues.  Instead I focus on diet, exercise and reducing stress.  

Have you looked into the Autoimmune Paleo Diet?  It might be worth pursuing or at least trying it for a few months.  Some IBD (Crohn’s and Ulcerative Colitis) patients at Scripps in San Diego, California achieved a 78% remission on this diet leading researchers to believe that diet can be helpful.  

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5647120/

The good news is that I can and have controlled my celiac disease with a gluten free diet.  At best, I try to manage my other AI issues without drugs using diet and exercise.  If my quality of life becomes unbearable, then I will consider medications.  I hope this helps you!  

 

 

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Hi Sueps,

That's rough stuff for sure.  I had a similar thing with a long recovery.  5 years and still didn't feel very well.   It seems there are a few possibilities.

You are eating something that your body reacts to.

You have another condition going on.

Since the food issues is something we can control and change, I'd like to think that's the cause.  I don't know how you did your exclusion diet, but there is a potential gotcha depending on method.  Imagine a person is reacting to carrots.  They eliminate carrots from their diet for a couple months and feel better.  However, imagine that some person is now also reacting to peppers.  And they do the same carrot elimination diet.  They haven't eliminated peppers though, only carrots.  So they are carrot free for a couple months but they still feel crappy because they are continuing to eat peppers.  If they had eliminated both of the problem foods at the same time, they would have felt better.

The way around this multiple food sensitivity problem is to do an elimination diet differently.  Instead of eliminating just a single food, instead eliminate most foods and slowly build up by slowly adding one food at a time.

It's a slow process but effective.

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Hi Sueps,

I'm sorry that you are still feeling bad 5 years on!  That has to be frustrating.  We were diagnosed close to the same time, my diagnosis was in January of 2014. 

I think that there should be such a thing as an autoimmunologist who is a specialist of all autoimmiune diseases since they seem to run together.  I see an endocrinologist for my Hashi's and a gastro for celiac, but wouldn't it be nice to have someone who understood the whole process and how these diseases work together?

Anyway...have you had thorough thyroid testing?  This would include TSH, Free T3, Free T4, TPOAb and TgAb.  The last 2 are antibody tests.  The reason I ask is that many celiacs have thyroid issues as well and thyroid issues can impact every part of your body.  When my thyroid goes out of whack it is miserable.  Most Dr's only test TSH and then say it's fine as long as the value is in the box.  The range on my tests is .5-4.5.  But I don't feel good unless I'm at around 1.  Thankfully my endocrinologist understands that.  So, something to think about.

As far as digestive issues go.  When you went gluten free you likely replaced your breads and pastas with gluten free versions like I did.  Those are generally made with some sort of gum.  I see xanthan gum most often.  That can cause digestive issues.  In fact, I think too much of it gives me abdominal pains, bloating, gas, etc.  I found this out when 2 holiday seasons in a row I've had a lot of digestive trouble.  And it just so happens that I bake a lot during that time and of course eat what I've baked.  Cutting way back on xanthan gum has helped my troubles.

I hope that you get some answers and that you feel better soon!

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Thanks for the replies.

The elimination diet I did this time last year was given to me by an NHS dietician. As far as I can remember I only ate lamb, chicken, rice, parsnips, celery, bananas, white sugar and vegetable oil and spread for several weeks. The indigestion was better in the first 2 weeks, then it came back and the diet was making me constipated. My other symptoms didn't improve so I there was no point in doing the reintroduction phase.

Some of the baked products I eat have Xanthan gum, some don't. I'm not sure if I could do the Paleo diet, it sounds a bit like food hell. I have almond milk but still eat normal cheese. I have decided that non-dairy cheese and rice crackers are the work of the Devil!

When I had the endoscopy last May they said I was coping well with the coeliac disease, and the few times I've accidentally eaten gluten I've only had a bit of constipation.

I have an under active thyroid and take thyroxine.

I'm more or less resigned to having to go private and have asked my GP for a referral, I hope they can suggest someone.

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1 hour ago, Sueps said:

Thanks for the replies.

The elimination diet I did this time last year was given to me by an NHS dietician. As far as I can remember I only ate lamb, chicken, rice, parsnips, celery, bananas, white sugar and vegetable oil and spread for several weeks. The indigestion was better in the first 2 weeks, then it came back and the diet was making me constipated. My other symptoms didn't improve so I there was no point in doing the reintroduction phase.

Some of the baked products I eat have Xanthan gum, some don't. I'm not sure if I could do the Paleo diet, it sounds a bit like food hell. I have almond milk but still eat normal cheese. I have decided that non-dairy cheese and rice crackers are the work of the Devil!

When I had the endoscopy last May they said I was coping well with the coeliac disease, and the few times I've accidentally eaten gluten I've only had a bit of constipation.

I have an under active thyroid and take thyroxine.

I'm more or less resigned to having to go private and have asked my GP for a referral, I hope they can suggest someone.

Paleo is actually the diet of our ancestors, just meat, fruits, nuts, seeds, and veggies. IE our ancestors did not stick their heads under cows and suck on their tits, or have time ti pick tiny grains off of pieces of grass and eat them or farm them. If your like me and need your fix still for cheese non dairy cheeses made with nuts can be treat. I also drink nut based milks daily.

I found I reacted to carbs, grains, sugars with bloating and distention, later had bloody stools and blood sugar issues as I got other issues so eliminated them.
I had issues with meats for years, I found my pancreas was not producing enzymes to break them down. I have this past month been enjoying meat for the first time in years by taking enzymes based on my diet macros and taking pig pancreas enzymes. Pancreas issues can cause bloating, undigested foods in stool, oily stool, and if not just enzymes blood sugar issues....I picked up on this by using a glucose monitor and finding a small amount of potatoes on a empty stomach could spike my blood sugar to the 400s.

If you have constipation issues on a elimination diet try rotating in some seeds, flax meal, chia meal are good and can be simply mixed into water, eggs, or baked goods and taken as a fiber supplement. Again rotation to see if they are bothering you.
Magnesium Citrate can help also like natural vitality calm, starting with 2g doses and upping the dose 2g a day til you get loose stools then back down til it is firm but easy to pass. Damaged intestines can have issues with magnesium...also you deplete it from your system with stress, and eating sugar/carbs.

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I'm glad the Paleo diet works for you, but it just isn't for me I'm afraid. In any case I need a diagnosis of Sjogren's or whatever else I might have; I don't think my problems are all diet based. Thanks anyway.

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Hi Sue,

It's good to do an elimination diet, but  I am not sure your doctor gave you the best plan for one.  Celery is one of the top food allergens in Europe.  I am not in Europe but I react to celery and also parsnips.  It would be better not to include any of the known common food allergens in your elimination diet IMHO.

https://farrp.unl.edu/ref-sit-eu

I had problems with rice for a few years also, but I can eat some rice now.  I just don't eat a lot of it.

It is better to troubleshot your diet first IMHO.  Maybe try some really plain basic food for a while.  I started my first elimination diet with just apples and salt.  And added chicken, peas, broccoli etc one at a time.  Each a few days apart.

I've done at least 5 elimination diets over the years to find foods that cause me GI problems and other symptoms.  I didn't need a doctor to do them and they helped me way more than taking pills would have.  If I had taken pills to cover up my symptoms and kept eating those bad foods. I'd still be sick today and maybe worse off.

Food is the best medicine someone said.  It can also make us really sick if we have bad reactions to it.

i don't know if you have any low minerals or vitamins?  Selenium really helped me at one point.

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But the AIP diet might help.  It was designed to help decrease inflammation and identify foods that may be triggering autoimmune symptoms. It is restrictive at first, but then can be broadened.   That small study at Scripps is encouraging.  A larger study is needed, but it takes money.  No one wants to fund a study that is not going to make them millions of dollars (like pharmaceuticals).   Imagine healing without needing medication or only a small amount to feel well and avoid all the side effects.   Scripps ( is part of the California University system (UC San Diego) like UC Berkeley or UC Los Angeles) is now crowd funding to study this diet with Hashimoto’s patients.    

https://www.medicalnewstoday.com/articles/320195.php

https://autoimmunewellness.com/our-story/

Will the diet help?  Who knows for sure, but take a serious look at the drugs offered for autoimmune disorders and carefully weigh the risks and benefits. 

I wish you well.  

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On ‎1‎/‎26‎/‎2019 at 6:13 AM, Sueps said:

Hi all, I'm resurrecting this as I'm still getting worse all this time later. My symptoms have never showed any signs of improvement, and I've gained more. I suspect I may have Sjogren's syndrome and am waiting for a lip biopsy for diagnosis.

The biggest problem I have now is that there doesn't seem to be anyone I can see who knows about all aspects of autoimmune conditions. Since I posted last I've had a colonoscopy, an endoscopy (found small hiatus hernia), I've seen an ENT specialist who told me to try nasal rinsing for my constant catarrh and phlegm in my throat, I've tried cutting out dairy and then an exclusion diet, and nothing has helped. I get stomach ache several times a week, sometimes it's really debilitating. I also get acid indigestion, tinnitus, fibroymyalgia (very mild), I'm still tired all the time and my brain is still foggy, dry mouth and eyes (this is what makes me suspect Sjogren's) random itching, several hot flushes a night, Raynaud's (mild), my limbs feel weak and my hips ache when going upstairs.

I went to the GP with this list and she referred me to a rheumatologist; but she only seemed interested in the dry eyes & mouth, Raynaud's (which I can cope with) and not much else. She said I'd have to see someone in gastro enterology about the stomach ache; so I'm going round in circles and getting really frustrated by it!

I'm thinking I may have to spend a lot of money to see a private autoimmune specialist as there doesn't seem to be anyone in the NHS who can cover it all; which is totally stupid as I think much of it is all connected.

If anyone in the UK has gone down this route I'd love to hear how you got on!

Just to clarify, I've read that Sjogren's can cause digestion problems by messing with the pancreas, and increased menopausal symptoms. I was on HRT in my 50's but decided that 10 years was enough. I'm now 64.

have you considered your stomach issues could be drainage from sinuses? I saw you mentioned phlegm also. maybe a simple famotidine at bed time would help.ask a doctor.

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I didn't know that celery was an allergen, but it's not something I normally eat anyway. I probably hadn't eaten any for over 20 years before the elimination diet, and haven't eaten any since. It doesn't appear as an ingredient in anything in my cupboard either. I would like a definite Sjogren's diagnosis before looking at my diet any more.

I'm sure the constant catarrh does affect my stomach and I've been taking stomach acid inhibitors for years. Nobody seems to be able to come up with anything that stops my post nasal drip. It comes and goes.

Anyway, I'll sign off now as there evidently isn't anyone here with experience of either Sjogren's or autoimmune specialists in the UK.

Thanks again!

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Maybe there is not a member who was recently diagnosed or is struggling with Sjogrens,but I used the search box and found over 300 past responses to Sjogrens.  You might find it useful.  Good luck!  

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9 hours ago, Sueps said:

I'm sure the constant catarrh does affect my stomach and I've been taking stomach acid inhibitors for years. Nobody seems to be able to come up with anything that stops my post nasal drip. It comes and goes.

Sueps,

You didn't say what kind of acid reducers you were using. ...H2 antagonist have a much safer profile than long term use of PPI's. There is a  lawsuit for Nexium a PPIs type.

https://www.drugwatcher.org/nexium-lawsuits/

also SLE and Sjorgens have similar symptom's are you sure it is not SLE being misdiagnosed.

https://www.healthtap.com/user_questions/205754-what-the-difference-between-sjogrens-syndrome-and-lupus-which-is-worse

Here is research that show overuse of PPIs can trigger SLE in some patients.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4914530/

this might be what is triggering your Sjorgens symptom's if SLE is mimicking your Sjorgens  . ...ever getting off of PPIs can he hard .. .see this Ennistx blog post that covers some of the steps necessary to get off of PPIs first to H2 blockers and then step down off this medicine eventually . ...usually over about 6+ months or so.

https://www.celiac.com/blogs/entry/2597-jan-2019/#comments

I hope this is helpful but it is not medical advice good luck on your continued journey.

Posterboy,

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Cyclinglady, I have had a look at some posts mentioning Sjogren's, I will look at some more.

Posterboy, I would like to come off the PPIs, it's something I'd like to discuss with an autoimmune specialist if I could find one! I do take Ranitidine occasionally, so I might try taking them instead.

I wouldn't be even close to getting a diagnosis of if I hadn't taken a list of my symptoms to my GP; the rheumatologist didn't seem to know much about Sjogren's and I had to ask her if I could have the lip biopsy. That was nearly 2 weeks ago and I'm still waiting for an appointment for that! I'll have a look at some of the links you posted, but I think it's Sjogren's as I have dry eyes and mouth.

Unfortunately the NHS doesn't seem to know what to do with those of us with complicated autoimmune disorders.

Thanks & bye!

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Sueps,

The dry eyes might be helped by taking Vitamin D.

It is one of the Vitamin/Minerals that can become low while taking acid reducers.

Vitamin D also plays a role as an immune system modulator. .. .and it might explain the Sjorgens.

Here is the research.   Good luck on your continued journey.

https://www.ncbi.nlm.nih.gov/pubmed/20427238 entitled "Vitamin D: modulator of the immune system."

Here is the nutrients that can become low will taking acid reducers.

https://www.medcline.com/blog/nutrient-deficiency-linked-to-acid-reflux-medications/

And here is the research on low Vitamin D in/with dry eye syndrome.

https://medicalxpress.com/news/2016-02-vitamin-d-linked-eye-syndromes.html

I hope this is helpful but it is not medical advice. ....I found that I was low in Vitamin D when I was diagnosed as a Celiac ....supplementing really helped my Vitamin D levels. ... and many of my dry eye symptom's.

2 Tim 2:7 “Consider what I say; and the Lord give thee understanding in all things” this included.

Posterboy by the Grace of God,

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Hi Sue,

https://en.wikipedia.org/wiki/Sjögren_syndrome

Wiki has quite a write-up on SS.  They mention ANA testing as a possible diagnostic.

.... Blood tests can be done to determine if a patient has high levels of antibodies that are indicative of the condition, such as antinuclear antibody (ANA) and rheumatoid factor (because SS frequently occurs secondary to rheumatoid arthritis), which are associated with autoimmune diseases. Typical SS ANA patterns are SSA/Ro and SSB/La, of which Anti-SSB/La is far more specific; Anti-SSA/Ro is associated with numerous other autoimmune conditions, but are often present in SS. However, Anti-SSA and Anti-SSB tests are frequently not positive in SS. ...

They also discuss a possible link to low estrogen levels.

I do have dry eyes and mouth and throat myself at times.  Mine is from a reaction to caffeine.  If I drink coffee or some other caffeine drink I get the dryness.  Caffeine also causes me to feel fatigued.  The longer I drink it (more days) the worse the symptoms get.

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